any advice? please?

mswijiknyc
mswijiknyc Member Posts: 421
edited March 2014 in Head and Neck Cancer #1
Hi - I'm a caregiver for my hubby who is still in the hospital recovering from a laryngectomy. Right now he wants to eat and swallow, but the docs all tell him not yet. Nothing in your mouth but antibacterial mouth swabs (which I bet taste like butt). I know he still has radiation to get through, as well as getting up to a healthy weight, all while trying to work with him on using his electrolarynx and all of the throat issues.

Is there anything I can do to make things better, easier, more interesting? Please keep in mind he is very very very stubborn and very very very resistant to not only change, but if it isn't what he wants he refuses to do it. thanks :)

Comments

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #2
    here
    No experience on the laryngectomy, Ms Wi. I can tell you from being the caregiver for my husband that your patient does have to make decisions and you have to respect them, so don't beat yourself up over a sweet but stubborn person who is not doing everything they should to get well. It takes time for some people.

    Other people who have laryngectomies will post. I would do a search on this site to find information already out there.

    Let us hear from you!
  • Hondo
    Hondo Member Posts: 6,636 Member
    #3
    Hi mswijiknyc


    Your husband sounds a lot like me, I too got hard to deal with while going through treatment but my wife never gave up. I am not sure how she done it but she got me through it somehow.
  • mswijiknyc
    mswijiknyc Member Posts: 421
    #4
    Hondo said:

    Hi mswijiknyc


    Your husband sounds a lot like me, I too got hard to deal with while going through treatment but my wife never gave up. I am not sure how she done it but she got me through it somehow.

    Hi Hondo
    not giving up on him either. when we got married in 2007, it was for good and bad, not just the good. I meant that when I married him and stuck by him through all the hard times so far. Was such a great thing today - he got moved from ICU to a step down unit and told him I'd be staying home to take care of a few things. We went back and forth for a minute "you need me to come tomorrow?" "if you want" and in the end he said I'll see you tomorrow and for a minute, I saw the man I married :) I lost him for a while (where the tumor was located was affecting his personality and made him very aggressive) but with time he will see himself as I see him - Hubby 2.0! :)

    She got you through things like I have been: sheer determination with understanding. and a lot of patience!

    Is there anything else that I can do to help him transition besides treat him like I always have? I know his throat will hurt when he starts to eat. What can I do to make the soft food diet less boring? Anything I can do to help with his stoma care? Me doing it for him is not an option.
  • ToBeGolden
    ToBeGolden Member Posts: 695
    #5
    mswijiknyc said:

    Hi Hondo
    not giving up on him either. when we got married in 2007, it was for good and bad, not just the good. I meant that when I married him and stuck by him through all the hard times so far. Was such a great thing today - he got moved from ICU to a step down unit and told him I'd be staying home to take care of a few things. We went back and forth for a minute "you need me to come tomorrow?" "if you want" and in the end he said I'll see you tomorrow and for a minute, I saw the man I married :) I lost him for a while (where the tumor was located was affecting his personality and made him very aggressive) but with time he will see himself as I see him - Hubby 2.0! :)

    She got you through things like I have been: sheer determination with understanding. and a lot of patience!

    Is there anything else that I can do to help him transition besides treat him like I always have? I know his throat will hurt when he starts to eat. What can I do to make the soft food diet less boring? Anything I can do to help with his stoma care? Me doing it for him is not an option.

    something to remember
    1) Pain medications (as well as other medications) affect a person's personality. Also the anesthetics used for surgery can affect the personality. The only times I have hallucinated were the days following various surgeries. And everyone is different. I don't think we can hold anyone responsible for what he does (and especially for what he says) until all the meds have cleared his system.
    2) Although I had only radiation, my throat (esophagus) was swollen and tender for weeks. I actually had a couple of pills stick half way down, and had to cough then back up. Not at all pleasant. I think the doctors know what they are talking about, although they may be advising with great caution.
    3) If your husband absolutely will choose to eat, hopefully, you can start him on something liquid or semi-liquid.
    4) For the first three weeks post radiation, all I could eat is water, cream of wheat, yogurt, and glucerna (like ensure but for diabetics). I couldn't even eat a small bite of white bread. It would be terrible if your husband ate something "hard" that got stuck and needed to be removed surgically. If you must, try a small amount of water, which would be absorbed through the lining of the throat.
    5) Perhaps you could get a tentative date from the doctors as to when your husband should be able to eat again. I always find it easier to endure something when I know the date it is going to end.

    Just some random thoughts. Maybe some "truth". But I'm sure there is also some poor advice, although that is not my intention. Rick.
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #6
    gene
    Stubborn is a gene I have, it is good and bad both. I always told my mother that one of the reasons I made it thru treatments, surgery and survived into a new normal was because of the gene that she gave me called STUBBORN. For that same reason it was harder on me because I was too stubborn to accept help. That is good and bad.

    Caregivers I believe have it harder than the fighter, they have to deal with the fighter and do everything else! I do mean everything as the fighter has to spend so much energy with the trip thru hell.

    mswijiknyc, we pray for you to have patience, maintain a positive mental attitude and be able to the outstanding caregiver your fighter needs.

    Sorry I did not have the surgery. I did come close after 13 years post treatment when they thought the cancer came back and they thought i was going to have a laryngectomy. As a blessing they found it to be an infection from long term side effect for treatments.

    Keep us posted with follow up posts.

    John
  • mswijiknyc
    mswijiknyc Member Posts: 421
    #7
    ToBeGolden said:

    something to remember
    1) Pain medications (as well as other medications) affect a person's personality. Also the anesthetics used for surgery can affect the personality. The only times I have hallucinated were the days following various surgeries. And everyone is different. I don't think we can hold anyone responsible for what he does (and especially for what he says) until all the meds have cleared his system.
    2) Although I had only radiation, my throat (esophagus) was swollen and tender for weeks. I actually had a couple of pills stick half way down, and had to cough then back up. Not at all pleasant. I think the doctors know what they are talking about, although they may be advising with great caution.
    3) If your husband absolutely will choose to eat, hopefully, you can start him on something liquid or semi-liquid.
    4) For the first three weeks post radiation, all I could eat is water, cream of wheat, yogurt, and glucerna (like ensure but for diabetics). I couldn't even eat a small bite of white bread. It would be terrible if your husband ate something "hard" that got stuck and needed to be removed surgically. If you must, try a small amount of water, which would be absorbed through the lining of the throat.
    5) Perhaps you could get a tentative date from the doctors as to when your husband should be able to eat again. I always find it easier to endure something when I know the date it is going to end.

    Just some random thoughts. Maybe some "truth". But I'm sure there is also some poor advice, although that is not my intention. Rick.

    Just out of surgery
    He just had his surgery 1 October to remove the tumor, then radiation will be next. what you're telling me is totally helpful, even if it's in the near future. For the most part, he isn't taking pain meds because he says he doesn't need them. He hurts but he's more sore n stiff n tender than anything. His pain tolerance is very high so take things a step at a time.

    What I will do for any pills is see if they can be put in a liquid to make things easier. Again Mr. Hard Head will fight me, but I'll see what happens. If things go well, he should have a Swallow Test on Monday.
  • mswijiknyc
    mswijiknyc Member Posts: 421
    #8
    fisrpotpe said:

    gene
    Stubborn is a gene I have, it is good and bad both. I always told my mother that one of the reasons I made it thru treatments, surgery and survived into a new normal was because of the gene that she gave me called STUBBORN. For that same reason it was harder on me because I was too stubborn to accept help. That is good and bad.

    Caregivers I believe have it harder than the fighter, they have to deal with the fighter and do everything else! I do mean everything as the fighter has to spend so much energy with the trip thru hell.

    mswijiknyc, we pray for you to have patience, maintain a positive mental attitude and be able to the outstanding caregiver your fighter needs.

    Sorry I did not have the surgery. I did come close after 13 years post treatment when they thought the cancer came back and they thought i was going to have a laryngectomy. As a blessing they found it to be an infection from long term side effect for treatments.

    Keep us posted with follow up posts.

    John

    Thanks
    Any advice is helpful, no matter where it comes from. I know this is hard enough, and on top I have a patient who is also having to readjust to life with out the voice he was born with and and extra hole to breathe out of. I try to imagine it, to see if I can put myself in his shoes, but I can't completely.

    What's helping me now is I'm just as stubborn as him. And I still do it with a smile :)
  • kimmygarland
    kimmygarland Member Posts: 312
    #9
    mswijiknyc said:

    Thanks
    Any advice is helpful, no matter where it comes from. I know this is hard enough, and on top I have a patient who is also having to readjust to life with out the voice he was born with and and extra hole to breathe out of. I try to imagine it, to see if I can put myself in his shoes, but I can't completely.

    What's helping me now is I'm just as stubborn as him. And I still do it with a smile :)

    I Understand
    I understand where you are coming from. My husband is 3 weeks out of surgery for recurrence of hypopharyngeal cancer of the throat and is a bit testy, to say the least. He does most things like he is supposed to but there are a couple of things that he's not doing that aggravate the krud out of me.... but he is ultimately responsible for his own recovery and although it's VERY hard for me to accept, I must accept it. The main thing he is doing has to do with the trache. He is supposed to be keeping it capped 24X7, so when he goes to doc on 10/12 they will take it out - it's making him miserable - coughing, etc. However, he keeps uncapping it to sleep instead of using his CPAP machine. I've nagged and nagged and now I'm done. If doc doesn't take out trache on 10/12, it's his own fault. Argh.

    Having said all that, I feel so sorry for him and everything he has been through that I just want to wrap my arms around him and cry my heart out! He is doing ok, and getting better every day, but oh man, what a hard road these guys (and gals) have to travel with this nasty form of cancer.

    He has a swallow test on Tuesday - hoping for good results. Hope you have good luck on Monday.

    Hang in there.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #10
    mswijiknyc said:

    Hi Hondo
    not giving up on him either. when we got married in 2007, it was for good and bad, not just the good. I meant that when I married him and stuck by him through all the hard times so far. Was such a great thing today - he got moved from ICU to a step down unit and told him I'd be staying home to take care of a few things. We went back and forth for a minute "you need me to come tomorrow?" "if you want" and in the end he said I'll see you tomorrow and for a minute, I saw the man I married :) I lost him for a while (where the tumor was located was affecting his personality and made him very aggressive) but with time he will see himself as I see him - Hubby 2.0! :)

    She got you through things like I have been: sheer determination with understanding. and a lot of patience!

    Is there anything else that I can do to help him transition besides treat him like I always have? I know his throat will hurt when he starts to eat. What can I do to make the soft food diet less boring? Anything I can do to help with his stoma care? Me doing it for him is not an option.

    Hi mswijiknyc


    You sound like you are already doing everything you can, the cancer will affect him in a lot of ways, just be there for him, like you said sheer determination with a lot of understanding and patience.

    Someday when the nightmare is over he will remember like I did his faithful wife being by his side through the darkest times in his life.

    My prayers are with you both
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #11
    kimmygarland said:

    I Understand
    I understand where you are coming from. My husband is 3 weeks out of surgery for recurrence of hypopharyngeal cancer of the throat and is a bit testy, to say the least. He does most things like he is supposed to but there are a couple of things that he's not doing that aggravate the krud out of me.... but he is ultimately responsible for his own recovery and although it's VERY hard for me to accept, I must accept it. The main thing he is doing has to do with the trache. He is supposed to be keeping it capped 24X7, so when he goes to doc on 10/12 they will take it out - it's making him miserable - coughing, etc. However, he keeps uncapping it to sleep instead of using his CPAP machine. I've nagged and nagged and now I'm done. If doc doesn't take out trache on 10/12, it's his own fault. Argh.

    Having said all that, I feel so sorry for him and everything he has been through that I just want to wrap my arms around him and cry my heart out! He is doing ok, and getting better every day, but oh man, what a hard road these guys (and gals) have to travel with this nasty form of cancer.

    He has a swallow test on Tuesday - hoping for good results. Hope you have good luck on Monday.

    Hang in there.

    stubborn people
    My husband and I tell people the only reason we have been married for 33 years (in a couple of weeks) is that we are both too stubborn to quit!

    Hugs to everyone and I hope the weekend is great!
  • denistd
    denistd Member Posts: 597
    #12
    Noellesmom said:

    stubborn people
    My husband and I tell people the only reason we have been married for 33 years (in a couple of weeks) is that we are both too stubborn to quit!

    Hugs to everyone and I hope the weekend is great!

    laryngectomy
    Hi, I did not have a laryngectomy but was close, my cancer was laryngeal and I had radiation and chemo, I do, however, know a lot about it as I have many friends that are laryngectomees. There is a terrific site out of England, but has members from all around the world. The site is called "laryngectomy life" it is fantastic, there are both laryngectomees on there and caregivers, anything you need to know is right there as well as tons of support. Also there is a site here in the States called "Webwhispers" more informative and not as user friendly as LL but a must join. Hang in there I have a friend here in York Pa who had a laryngectomy in 1994 and is still going great. Denis
  • mswijiknyc
    mswijiknyc Member Posts: 421
    #13
    denistd said:

    laryngectomy
    Hi, I did not have a laryngectomy but was close, my cancer was laryngeal and I had radiation and chemo, I do, however, know a lot about it as I have many friends that are laryngectomees. There is a terrific site out of England, but has members from all around the world. The site is called "laryngectomy life" it is fantastic, there are both laryngectomees on there and caregivers, anything you need to know is right there as well as tons of support. Also there is a site here in the States called "Webwhispers" more informative and not as user friendly as LL but a must join. Hang in there I have a friend here in York Pa who had a laryngectomy in 1994 and is still going great. Denis

    :)
    Thanks for the all the advice so far. He's getting there - taking things a day at a time.

    Have a great weekend everyone :)
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #14
    mswijiknyc said:

    :)
    Thanks for the all the advice so far. He's getting there - taking things a day at a time.

    Have a great weekend everyone :)

    you can
    that is all you can do is day by day, then it might be hour by hour. You Can and You Will.

    Keep it going forward and do not look back.

    John
  • mswijiknyc
    mswijiknyc Member Posts: 421
    #15
    Patrick the Grouch
    Suffice it to say the first thing he ate was a burger and fries from McDonalds. I don't think I have ever seen doctors move that fast in my entire life. They still put him on a liquid diet at first (why?? he just ate normal food!!) and because he is having some issues with his drainage tubes with a possible unknown leak, he is having to stay a couple days more. Suffice it to say, being the caregiver to an obstinate man who wants to go home NOW RIGHT NOW is becoming very difficult.

    I'm walking the fine line of letting him have what he wants because he is sick and telling him he is being a jerk and to build a bridge and get over it. Not easy to find the middle ground. But as long as he is talking to me instead of shutting me out, it's a good thing. However the next time he yells at me and throws things I'm leaving. I don't care how frustrated you are, act grown.
  • friend of Bill
    friend of Bill Member Posts: 87
    #16
    mswijiknyc said:

    Patrick the Grouch
    Suffice it to say the first thing he ate was a burger and fries from McDonalds. I don't think I have ever seen doctors move that fast in my entire life. They still put him on a liquid diet at first (why?? he just ate normal food!!) and because he is having some issues with his drainage tubes with a possible unknown leak, he is having to stay a couple days more. Suffice it to say, being the caregiver to an obstinate man who wants to go home NOW RIGHT NOW is becoming very difficult.

    I'm walking the fine line of letting him have what he wants because he is sick and telling him he is being a jerk and to build a bridge and get over it. Not easy to find the middle ground. But as long as he is talking to me instead of shutting me out, it's a good thing. However the next time he yells at me and throws things I'm leaving. I don't care how frustrated you are, act grown.

    Take care of yourself
    Your hubby sounds like me during the onery, "uncoachable" phase of my life. Might give him choices with the probable consequences attached, then whatever the outcome, he chose it. Time-out might help with tantrums. Get away and take care of yourself. Caregiving is painstakingly difficult - taking abuse is not part of the job description. Medical social workers can sometimes help with the "bridge building" you hope for. Take care of yourself. Did I already say that? Good luck.

    Vince

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