update on my dad - not good

Pumakitty
Pumakitty Member Posts: 652
in Head and Neck Cancer #1

I wanted to update all of you on my dad.  It seems that he has really taken a turn and not in the good direction.  Like I posted before this all started on December 29th when he fell two days in a row.  He was talking srange stuff and keep thinking there were people in the house.  He walking became very bad.  When we saw the doctor it was determined that he was going through withdrawl after getting fentenyal patches that were not any good.  When I put the new patch on things seemed to improve for a day or two and then right back where they were. 

Over the weekend he fell out of the bed again.  He is talking normal, but still hearing things and his walking is really bad.  He goes for at CT on Monday and then sees the doctor on the first.  I am not sure what has happened so quickly. 

We do not let him drive anymore or go to the store.  He can not walk that long and I am afraid that he would get confused.  He can not keep track of the day or time.  Mom and I do not leave him anymore.  At night we hardly sleep because he roams all night and we are afraid that he will fall.  I am thinking he may be having dementa starting.

 

I am sorry to post such gloomy news, but I really needed someone to talk with about this.  Mom is a nervous wreck dealing with this when I am at work.  I will let you know what we find out on the 1st.

 

Thanks for listening.

 

Kathy

 

Comments

  • ausrebel53
    ausrebel53 Member Posts: 74
    #2
    Don't be sorry

    Hi Kathy, please don't be sorry for asking for a listening ear or advise or for just wanting to vent, that is why we are here. Yours is a difficult position and we patients wouldn't be here if you did not help us. You can't begin to know how appreciated you are by giving so much and by just being there for us. I really hope your dad improves, perhaps he is going through withdrawal from the fentenyal patches, they were recommended to me but I chose MS Contin 60 mg per 12 hrs, even these I was told could result in withdrawal symptoms. I guess the priority here is your dads recovery from cancer, I pray all goes well for you in that dept. and I'm sure the doc can help with the withdrawal if that is what it is. Between the pain meds, the chemo and the radiation we are all subject to varying types of side effects and at varying intensities as we are all different.

    We are all thinking of you and hoping the news isn't gloomy and I am sure people much wiser and with more experience will help here also

    Please take care

    Kind regards

    Michael

  • ausrebel53
    ausrebel53 Member Posts: 74
    #3
    Also

    Also I can't sleep at night, everything is so turned around with the meds, chemo, not eating etc. by the time we start to come down from all the treatments and pills things will go back to a new normal I guess. My problem has been so many changes brought about by the cancer and the treatment, I have a trach in my throat which doesn't help (this is so I can breathe, lump on my larynx stopping me). I would be lucky to get 4 hrs sleep at night and have felt dizzy at times. Regarding my memory, I never had one to begin with so it didn't seem I lost anything there. I'm not being flippant, it's true, my wife said I would lose my head if it was loose and of course I always try to blame her for whatever I can't find.

    Bless you Kathy and thank you for your service as a caregiver

    Kind Regards

    Michael

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #4
    ausrebel53 said:

    Also

    Also I can't sleep at night, everything is so turned around with the meds, chemo, not eating etc. by the time we start to come down from all the treatments and pills things will go back to a new normal I guess. My problem has been so many changes brought about by the cancer and the treatment, I have a trach in my throat which doesn't help (this is so I can breathe, lump on my larynx stopping me). I would be lucky to get 4 hrs sleep at night and have felt dizzy at times. Regarding my memory, I never had one to begin with so it didn't seem I lost anything there. I'm not being flippant, it's true, my wife said I would lose my head if it was loose and of course I always try to blame her for whatever I can't find.

    Bless you Kathy and thank you for your service as a caregiver

    Kind Regards

    Michael

    Kathy

    Sorry to hear this news. Have no experience with the patches, or what might be going-on to cause this turn south for him, but hope and Pray things get better. 

    kcass

  • Jan Trinks
    Jan Trinks Member Posts: 477
    #5
    Prayers your way

    Kathy:

     

    So sorry to hear this news.  Will be praying for you, your mom and dad.  It is truly heartbreaking to watch a loved one go thru this.  I was very close to my daddy and he passed away from heart surgery when I was 19.  That was almost 40 years ago I can't believe it's been that long.  But not a day goes by that I don't think about him.  He was such a character, fun and truly the epitome of fatherhood.  Of course being the youngest and and totally unexpected and finally a girl after my sister and three brothers who were all 15, 12, 10, and 6 when I was born, I truly was a daddy's girl!  He and my mother were such a great team and certainly brought their 5 children up right!  Prayers your way and hope things get better.  God Bless!

     

    Jan (Basketcase)

  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #6
    So sorry to hear this.

    Sometimes life gets very dark, and all we can do is hang in there as best we can.  Just keep moving forward one day at a time.

    Deb

  • Billie67
    Billie67 Member Posts: 898
    #7
    D Lewis said:

    So sorry to hear this.

    Sometimes life gets very dark, and all we can do is hang in there as best we can.  Just keep moving forward one day at a time.

    Deb

    Kathy
    I'm not sure if this is the problem or not but, I had those problems (almost identical) when I was on the patches. At first we thought it was because it was too high of a dose for me. We lowered the dose and I did have some improvement but I was still dizzy, forgetful and I couldn't focus for anything. While I did get pain relief I was so out of it, even on the lowest dose they come in. Maybe it's the patch doing this to your dad? If I understand you correctly you say he was on the patch which you believed was bad so you changed to new ones and it got better for a while right? Now it's back to giving him these crazy side effects? It might be worth it to try a new pain med. If he has a PEG you can get liquid or crush and dissolve tablets and put them thru the PEG, that's what I had to end up doing. That fentanyl is some strong stuff and not for everyone.
    Good luck with this issue, I'm sorry you are having to deal with this on top of everything else.
    Billie
  • jim and i
    jim and i Member Posts: 1,788 Member
    #8
    I agree with Billie

    My husband was on the mildest pain meds and had similar problems. I had to figure out that it was the pain meds, doctors do not seem to think of it. My husband has always had memorie problems on any type of pain meds so I knew right away what it was. Unfortunately there wasn't anything milder so I just had to keep an I on him and give him the lowest dose until he healed.

     

    Praying for you all.

    Debbie

  • Pumakitty
    Pumakitty Member Posts: 652
    #9
    jim and i said:

    I agree with Billie

    My husband was on the mildest pain meds and had similar problems. I had to figure out that it was the pain meds, doctors do not seem to think of it. My husband has always had memorie problems on any type of pain meds so I knew right away what it was. Unfortunately there wasn't anything milder so I just had to keep an I on him and give him the lowest dose until he healed.

     

    Praying for you all.

    Debbie

    Thank you

    I really do think it is the patches.  The other night he was his normal self and talked to mom and I and watched a little TV.  It was time to put a new patch on and when he woke up he was kinda out of it again.  It has not been as bad as over the holidays, but he is still not right.  Last night he did sleep all night so that was good.  It has been really stressful not knowing how he will be from on hour till the next.

     

    Thanks for all your comments and I will keep you updated.

     

    Love and Hugs,

     

    Katt

  • VivianLee5689
    VivianLee5689 Member Posts: 546
    #10
    Pumakitty said:

    Thank you

    I really do think it is the patches.  The other night he was his normal self and talked to mom and I and watched a little TV.  It was time to put a new patch on and when he woke up he was kinda out of it again.  It has not been as bad as over the holidays, but he is still not right.  Last night he did sleep all night so that was good.  It has been really stressful not knowing how he will be from on hour till the next.

     

    Thanks for all your comments and I will keep you updated.

     

    Love and Hugs,

     

    Katt

    Frustrating

    Katt I hope things get straightened out with your dad.  It must be super stressful to be in your situation.  It does sound like the patches  Hopefully they can find something to control the pain that doesn't have that nasty side effect.

  • Pam M
    Pam M Member Posts: 2,196
    #11
    Argh!

    So sorry you and yours are going through this.  I know it's scary.  My family had a similar scare a couple years ago (while prepping for a colonoscopy, my dad developed a chemical imbalance and lost his mind - personality change, confusion, aggressive behavior, confusion, visual and aural hallucinations).  In our case, it was a fairly easy fix (hospitalization and IV meds - unfortunately in restraints for over a week).  My great fear was that my dad would be in the (small) group with long-term debilitation - I know you've got to be beside yourself.  Really hoping the meds can get straightened out soon, and that will sort the issues he's experiencing.

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #12
    Thoughts & Prayers

    Thoughts & Prayers Kathy...

    John

  • patricke
    patricke Member Posts: 570 Member
    #13
    UPDATE

    Hey Kathy, I'm sorry to hear about the bad turn of events for your dad, I can't imagine how difficult that it must be for you and your mom.  Given what you are saying, I'm hoping that maybe it is the meds, and not dementia.  In the meantime, hang in there, my thoughts and positive energy support are with you.

    PATRICK

  • Vee1
    Vee1 Member Posts: 59
    #14
    The patches...

    Hello,

    My husband reacted very similarly on fentanyl patches.  The dosage was too high for him.  I hope your recheck is encouraging...

    God bless.

    -V

  • hwt
    hwt Member Posts: 2,328 Member
    #15
    Vee1 said:

    The patches...

    Hello,

    My husband reacted very similarly on fentanyl patches.  The dosage was too high for him.  I hope your recheck is encouraging...

    God bless.

    -V

    patches

    When the dose on my patch was increased I didn't last a week before having it reduced again. Hope a change or removal of the patch solves your Dad's issues

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #16
    Dad

    Kathy,

     

    I am sorry to hear about your Dad’s episodes, I agree it must be frightening.

     

    I hope you get a handle on it soon and that he will be alright.

     

    Matt

  • connieprice1
    connieprice1 Member Posts: 300 Member
    #17
    allergic reaction

    Pummakitty,      A friend of mine had the same symptoms after taking heart medication. Dementia, lack of balance causing him to fall down often and episodes of paranoia. He was always sharp as a tack before this happened. I personally thought maybe he had a stroke but his doctor took him off the medicine he was taking because he thought he was allergic to the medication. I am not convinced as to what happened to Mr. Gibson but he has never been the same since although sometimes when I am talking to him he is his old self. I'm not sure if this info could help with your father but their symptoms are identical. Mr. Gibson had heart surgery bringing about this condition and never used fentenyal patches. Medicine is a science but their seems to be a lot of guesswork involved in it. I hope your father gets better and I am not a doctor but you never know. Good Luck, Homer & Connie 

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #18
    connieprice1 said:

    allergic reaction

    Pummakitty,      A friend of mine had the same symptoms after taking heart medication. Dementia, lack of balance causing him to fall down often and episodes of paranoia. He was always sharp as a tack before this happened. I personally thought maybe he had a stroke but his doctor took him off the medicine he was taking because he thought he was allergic to the medication. I am not convinced as to what happened to Mr. Gibson but he has never been the same since although sometimes when I am talking to him he is his old self. I'm not sure if this info could help with your father but their symptoms are identical. Mr. Gibson had heart surgery bringing about this condition and never used fentenyal patches. Medicine is a science but their seems to be a lot of guesswork involved in it. I hope your father gets better and I am not a doctor but you never know. Good Luck, Homer & Connie 

    Sorry I missed this post!!!???

    Whispered a prayer for a turn-round real soon......I'm sorry for your current situation Pummakitty...

     

    Best,

     

    Tim

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