At wits end... What wit?

NJShore
NJShore Member Posts: 429 Member
edited January 2013 in Head and Neck Cancer #1

Today, er yesterday was a new low for me as a caregiver. After not being able to take meds recently, and being up all night wretching for two nights straight, after losing 3 lbs over night, we walked into the doctors office, where some being who took over my husbands body snapped at me and said 'you better not get me admitted'. The only thing I said during his visit, is will we see the doctor today? She had made a previous reference during the week, that she would see him on Friday again. The rad onc said, the oncologist wanted him admitted earlier in the week, she said I think you should stay, and he said no. She said come to emergency if you need to then, and walked out of the room.

Now I am the horrible person for suggesting to him that maybe he should get some extra fluids over the weekend, and at least when he couldn't take his meds they'd help with IV meds for pain and nausea. Since I get horrible looks, and I know I am not to take these things personally.. I am hurt. I know this is cancer talking, not the man I married, we are in a city away from home, I have tried to move mountains, and up until he started down hill with getting things down, he actually would tell me how glad he was I was here and how much I've helped with things that he had no clue about. 

I Sound like its a pity party, but it is 3 am on a third night with little sleep, so most likely it is!. I asked them today to give him pain meds in his IV since he last took them the afternoon before, and he's sleeping, probably clueless, that he sliced through me like a hot knife through butter today.. he's not in this alone, and I feel so far away from him right now.. It's scary and this might be on the wrong thread but jeesh, cancer sucks.

Thank you for listening.

 

 

Comments

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    You have a right to

    have a pity party.  Being a caregiver is no easy job and especially when we are caregivers to our husbands.  And yes cancer sucks and it changes personalities too.  My husband is just as stubborn about going into the hospital or even to the doctors anymore.  And I am told I don't understand well no I don't understand everything he has been thru and is going thru but he doesn't understand what this horrible disease does to the caregiver too. 

    If he needs fluids than he should be in the ER.  When they become dehydrated their bodies really react.  My husband became very dehydrated the first time he had chemo but the oncologist gave him fluids daily in the office and it helped.  The second time he had chemo, he made sure he drank enough water to not have a problem.  Guess he was lucky also because he never had terrible nausea either time.  The medication they gave him helped.

    Sharon

  • staceya
    staceya Member Posts: 720
    Ladylacy said:

    You have a right to

    have a pity party.  Being a caregiver is no easy job and especially when we are caregivers to our husbands.  And yes cancer sucks and it changes personalities too.  My husband is just as stubborn about going into the hospital or even to the doctors anymore.  And I am told I don't understand well no I don't understand everything he has been thru and is going thru but he doesn't understand what this horrible disease does to the caregiver too. 

    If he needs fluids than he should be in the ER.  When they become dehydrated their bodies really react.  My husband became very dehydrated the first time he had chemo but the oncologist gave him fluids daily in the office and it helped.  The second time he had chemo, he made sure he drank enough water to not have a problem.  Guess he was lucky also because he never had terrible nausea either time.  The medication they gave him helped.

    Sharon

    Being a caregiver is hard.

    I was a caregiver when I was young and a head and neck cancer patient 20 years later.
    Being the patient was way easier in my opinion and that is saying a lot for what you do! 
    Is there anyone to help you out, give you a day off?
    Sending you thanks and strength and hugs.
    Stacey

  • Fire34
    Fire34 Member Posts: 365
    HomeHealth

    Is there any type of home health care in your area? They could then come and give your husband fluids etc. Does he still have his port, if he had one? My port stayed acessed for most of my post treatment. My oncology team ordered home health visits for me after treatment. After he recovers he will see how lucky he is to have you. I know I was with my wife. Keep a positive attitude and things will get better. Wishes & Prayers

    Dave

  • wolfen
    wolfen Member Posts: 1,324 Member
    Fire34 said:

    HomeHealth

    Is there any type of home health care in your area? They could then come and give your husband fluids etc. Does he still have his port, if he had one? My port stayed acessed for most of my post treatment. My oncology team ordered home health visits for me after treatment. After he recovers he will see how lucky he is to have you. I know I was with my wife. Keep a positive attitude and things will get better. Wishes & Prayers

    Dave

    The Free Gift

    This is not meant to be funny.

    Unfortunately, you've just received another "free gift" that cancer provides. "The Emotional Yo-Yo"  In reality, your husband probably doesn't even realize that he snapped at you. Cancer, as well as any serious illness, can tend to bring out the worst in someone. Your concern is seen as nagging. Your suggestions are heard as orders. When all you're trying to do is help.

    At times, you wonder if there is still a "you" in there someplace. You'll learn to just tune out these episodes. It may take a gentle reminder that you're not a dishrag.

    My hubby thinks I am Mrs. Polyanna with blinders on. I think he's Mr. Doom & Gloom. Neither of us walks in the others shoes and never will. So, I just try to to hit a happy medium. I've been "nagging" for more than 40 years now, and will continue to do so.

    And guys, don't be offended by this one. I think it may be harder for men to accept suggestions from spouses. We really have your best interests at heart and aren't trying to "control" you. We just simply love you.

    So, if this type of thing hapens again, just remember it's the temporary down drop of that yo-yo and it will come back up soon.

    Luv,

    Wolfen

  • NJShore
    NJShore Member Posts: 429 Member
    staceya said:

    Being a caregiver is hard.

    I was a caregiver when I was young and a head and neck cancer patient 20 years later.
    Being the patient was way easier in my opinion and that is saying a lot for what you do! 
    Is there anyone to help you out, give you a day off?
    Sending you thanks and strength and hugs.
    Stacey

    Out on good behavior!

    Stacey,

    good advice. This morning it was still a fight to stave off the tears, my girlfriend dropped off he husband (a dr), so I left him in good hands, and took off wfriend friend, we ran errands I needed to do, but to be free and doing normal things, with someone who khere where to find the stores I needed was an incredible, long overdue 3 hrs off duty!

    i am renewed. Hopefully we will get home again before any more pointy parties.. I can usually fix them with a long hot soak!

    thank you, 

    Kari

  • NJShore
    NJShore Member Posts: 429 Member
    Fire34 said:

    HomeHealth

    Is there any type of home health care in your area? They could then come and give your husband fluids etc. Does he still have his port, if he had one? My port stayed acessed for most of my post treatment. My oncology team ordered home health visits for me after treatment. After he recovers he will see how lucky he is to have you. I know I was with my wife. Keep a positive attitude and things will get better. Wishes & Prayers

    Dave

    Home?

    Dave,

    what a wonderful idea, I read your post to my husband and his eyes lit up.. We are going to ask the doctor if she won't arrange this for him, instead of staying here in the city. I so miss my dog, and bed!

    Kari

  • VivianLee5689
    VivianLee5689 Member Posts: 546
    wolfen said:

    The Free Gift

    This is not meant to be funny.

    Unfortunately, you've just received another "free gift" that cancer provides. "The Emotional Yo-Yo"  In reality, your husband probably doesn't even realize that he snapped at you. Cancer, as well as any serious illness, can tend to bring out the worst in someone. Your concern is seen as nagging. Your suggestions are heard as orders. When all you're trying to do is help.

    At times, you wonder if there is still a "you" in there someplace. You'll learn to just tune out these episodes. It may take a gentle reminder that you're not a dishrag.

    My hubby thinks I am Mrs. Polyanna with blinders on. I think he's Mr. Doom & Gloom. Neither of us walks in the others shoes and never will. So, I just try to to hit a happy medium. I've been "nagging" for more than 40 years now, and will continue to do so.

    And guys, don't be offended by this one. I think it may be harder for men to accept suggestions from spouses. We really have your best interests at heart and aren't trying to "control" you. We just simply love you.

    So, if this type of thing hapens again, just remember it's the temporary down drop of that yo-yo and it will come back up soon.

    Luv,

    Wolfen

    I empathize

    I understand why you feel down.  It's hard trying to do everything, keep everything going and be married to someone who doesn't appear much like the man you love.  Don't get me wrong I love David but it is hard when you are seen as the bad guy or ignored.  It's a lonely place to be.  As far as home health they are great; however, I give David his IV fluids and antibiotics myself.  They have trained me and trust I can tell when he is getting dehydrated.  It is great to have one less thing to worry about.  Keep doing what you are doing, when this is over your hubby will be so thankful that you took such good care of him.

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    The caregiver gets a vote, maybe two

    Cancer doesn't just 'happen' to the patient.  It happens to everyone around him/her who is either caring for them on a daily basis or who loves them enough to be concerned.

    When in doubt about what to do at times like the one you describe, you should err on the side of "doing something, not nothing" even if it turns out to be a false alarm. 

    Let me tell you how I found out about so-called false alarms.  It happened a few days after my second of three chemo infusions.  My wife and I were getting ready for bed and I told her I had been feeling especially shi@@y for the last few hours.  She asked me if I wanted to go to the ER.  I was really tired and said no--if I woke up feeling the same way we would go in the morning.  She insisted that we go and got herself and me ready.  I complained a little, but figured that a false alarm and a couple hours of lost sleep was the worst it could be.

    Long story short, the ER docs took one look at me, and admitted me right away.  In the middle of the night a nurse came running to my room, saying that my heart rate monitor was going crazy--reading 180 beats a minute!  She asked me if I could feel that, and I said, "Nope, what's the problem?"  The problem was that I was having a very serious a-fib episode in my sleep and due to the meds I was on, would have slept right through it--until it probably killed me.  The cardiac "SWAT Team" was called and it took over an hour to regulate my heart.  I then spent the next three days in the hospital.

    If my wife hadn't inssted on going to the ER right away, I don't think I would have lived through that night.  After that, I got one vote on all decisions, and she got two votes!

     mike

     

  • NJShore
    NJShore Member Posts: 429 Member
    wolfen said:

    The Free Gift

    This is not meant to be funny.

    Unfortunately, you've just received another "free gift" that cancer provides. "The Emotional Yo-Yo"  In reality, your husband probably doesn't even realize that he snapped at you. Cancer, as well as any serious illness, can tend to bring out the worst in someone. Your concern is seen as nagging. Your suggestions are heard as orders. When all you're trying to do is help.

    At times, you wonder if there is still a "you" in there someplace. You'll learn to just tune out these episodes. It may take a gentle reminder that you're not a dishrag.

    My hubby thinks I am Mrs. Polyanna with blinders on. I think he's Mr. Doom & Gloom. Neither of us walks in the others shoes and never will. So, I just try to to hit a happy medium. I've been "nagging" for more than 40 years now, and will continue to do so.

    And guys, don't be offended by this one. I think it may be harder for men to accept suggestions from spouses. We really have your best interests at heart and aren't trying to "control" you. We just simply love you.

    So, if this type of thing hapens again, just remember it's the temporary down drop of that yo-yo and it will come back up soon.

    Luv,

    Wolfen

    Free gifts..

    Wolfen,

    thank you, you brought a huge smile to my face... I even read it to my husband.. He smiled too. Although its a reality, you've made it a bit more palatable. Its amazing how it helps heal our emotions when we know we are not alone, and someone "gets me!"

    Kari

     

     

  • NJShore
    NJShore Member Posts: 429 Member
    Mikemetz said:

    The caregiver gets a vote, maybe two

    Cancer doesn't just 'happen' to the patient.  It happens to everyone around him/her who is either caring for them on a daily basis or who loves them enough to be concerned.

    When in doubt about what to do at times like the one you describe, you should err on the side of "doing something, not nothing" even if it turns out to be a false alarm. 

    Let me tell you how I found out about so-called false alarms.  It happened a few days after my second of three chemo infusions.  My wife and I were getting ready for bed and I told her I had been feeling especially shi@@y for the last few hours.  She asked me if I wanted to go to the ER.  I was really tired and said no--if I woke up feeling the same way we would go in the morning.  She insisted that we go and got herself and me ready.  I complained a little, but figured that a false alarm and a couple hours of lost sleep was the worst it could be.

    Long story short, the ER docs took one look at me, and admitted me right away.  In the middle of the night a nurse came running to my room, saying that my heart rate monitor was going crazy--reading 180 beats a minute!  She asked me if I could feel that, and I said, "Nope, what's the problem?"  The problem was that I was having a very serious a-fib episode in my sleep and due to the meds I was on, would have slept right through it--until it probably killed me.  The cardiac "SWAT Team" was called and it took over an hour to regulate my heart.  I then spent the next three days in the hospital.

    If my wife hadn't inssted on going to the ER right away, I don't think I would have lived through that night.  After that, I got one vote on all decisions, and she got two votes!

     mike

     

    My admiration...

    Mike,

    i so admire your wife, and her good critical thinking skills! A friend of mine described our roles very well this am, she said I was thinking strategically. And that my husband thinks tacticly. I am looking at the original goals and planning to meet all the needs, while he is working on today. Unfortunately, yesterday he wanted sleep more than get help, and I need to keep my confidence level up to protect his long term interest.

    thank you for sharing your story.. It helps!

    Kari

  • ditto1
    ditto1 Member Posts: 660
    NJShore said:

    My admiration...

    Mike,

    i so admire your wife, and her good critical thinking skills! A friend of mine described our roles very well this am, she said I was thinking strategically. And that my husband thinks tacticly. I am looking at the original goals and planning to meet all the needs, while he is working on today. Unfortunately, yesterday he wanted sleep more than get help, and I need to keep my confidence level up to protect his long term interest.

    thank you for sharing your story.. It helps!

    Kari

    I wonder if Halmark could

    come to our rescue.  I know I have not played fair with Diane many times during my treatments over the last 11 months, many times I just was mad at my situation and the doggone cancer and what it was doing to me, us everthing going south.  So often when I wanted to hold her the tightest and let her know how precious she is to me I would lash out, fuss over suggestions or just be a Butt.  This was not consistent, but it did not matter anytime I lashed out to someone who was having as hard or harder time than I was , was just unacceptable.  I would not have made it this far without her and I assure you I have told her  that, and aplogized for my many outburst.  All that said keep up the good work you are doing, you love him and visa versa, all this will pass.  If nothing else get the biggest NERF BAT you can get and knock him around a bit.  Diane considered that but I had to send her back to the store for the NERF BAT, the wooden one she had was hidden by the kids.  Thank you Kids. LOL

  • phrannie51
    phrannie51 Member Posts: 4,716
    You go ahead and have a

    pity party when you need one....When people get this kind of sick they get wrapped up in themselves, and "forget" that this other personin the room is there only to care for us....I can tell you that I was very leery of having Greg for a caregiver....I mean this is a man who prides himself on his crankiness.  I didn't think I could hold up under a cranky nurse.   He turned out to be the best darn caretaker....but I was also aware that I was sure glad I was the one who was sick, because caring for him would have been a night and day battle. 

    I think you have every right to say something (when you aren't feeling as hurt as you are now)...afterall, you're there totally to ensure that he not only beats cancer, but that he lives thru treatment.....dehydration and nutrition being the top two requirements to do that.  You're right in that it's the cancer talking...and it wasn't personal....but that only works for a while, and this is a long term recovery...you get wore down.  I can guarentee you tho, once he gets thru all this.....his gratitude for you walking this path with him is going to shine thru big and bright.

    We're always here to listen.....and you know we are huge appreciators of caregivers.....you've got a sympathetic audience in this room.

    p

  • DrMary
    DrMary Member Posts: 531 Member
    This is why God made beer

    and whiskey, etc.  I'm not recommending you drink, but such a situation could certainly drive one to do so.  Instead, try to make sure you are getting enough emotional support somewhere (good nutrition, antidepressants, counselor, whatever).  Easier said than done - I was not a good example of doing any of that.

    Dehydration and nausea can also cause constipation - which (in its worst form) makes it very hard to keep anything down, as the digestive system refuses to take anything else in until the blockage is removed.  Something to discuss with the doctor, if you haven't already (and yet another thing for your husband to bite your head off about, but tough).  Our doctor told us about someone who had gone weeks. . . just didn't want to admit it.

    In-office or outpatient IV rehydration really helps.  We were doing it 2-3x a week and it made a huge difference.

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    give her a break

    NJShore,

     

     You sound like you handled the situation fine.  Your husband sounds dehydrated.  Even though the caregiver is in Position #1 the patient has to (try) and think for themselves. I was very aware of the dangers of dehydration and the importance of swallowing (from reading this forum). 

     

    I hope you can get some real sleep; you deserve it.  Keep being proactive and stay on top as you have, I guarantee he is in no position to argue. 

     

    My wife did catch one break every day of treatments because I needed to take 1 Lorazapam before wearing the mask and it made me very sleepy the rest of the day (if you catch my drift).

     

    Best,

     

    Matt

  • boardwalkgirl
    boardwalkgirl Member Posts: 269
    I have said many times that I

    I have said many times that I think the role of caregiver is much harder than being the patient and I was the patient. I would rather have the beast myself then have my husband have it. He was very good to me thru out all of it and I couldn't have done it without him. There is probably a good chance your husband won't even really remember how he acted towards you but I am sure he didn't mean it. Most of my summer is just a blur, just the same things day after day. It will get better, hang in there.

  • hwt
    hwt Member Posts: 2,328 Member

    I have said many times that I

    I have said many times that I think the role of caregiver is much harder than being the patient and I was the patient. I would rather have the beast myself then have my husband have it. He was very good to me thru out all of it and I couldn't have done it without him. There is probably a good chance your husband won't even really remember how he acted towards you but I am sure he didn't mean it. Most of my summer is just a blur, just the same things day after day. It will get better, hang in there.

    Kari

    When I was dehydrated, I went  daily to the chemo lab for a week and got fluids without being admitted. It is ever so important for you to schedule some "me time" each and every week. I know when my sisters took my husband up to the casino a couple of hours it was a bright spot for me as the patient. We all feel anger over our situation and I'm certain your husband is appreciative of all you do. I know I snapped at my husband and sister more than once and certainly did not mean it. Unfortunately, it just happens.

  • Billie67
    Billie67 Member Posts: 898
    hwt said:

    Kari

    When I was dehydrated, I went  daily to the chemo lab for a week and got fluids without being admitted. It is ever so important for you to schedule some "me time" each and every week. I know when my sisters took my husband up to the casino a couple of hours it was a bright spot for me as the patient. We all feel anger over our situation and I'm certain your husband is appreciative of all you do. I know I snapped at my husband and sister more than once and certainly did not mean it. Unfortunately, it just happens.

    Kari

    Dehydration can do crazy things to us. When I was sick and vomiting for a few days I became very dehydrated and spent 3 days in the hospital. Honestly had I known I was heading that way I would have gone sooner for fluids and probably wouldn't have had to stay even one night. After that my oncologist had me go to "short stay" 3 times a week for hydration. My oncologist in in the hospital so I would just head upstairs after radiation and get comfy in a bed for a few hours and get my fluids. Then I could go home and I honestly would feel so much better after being hydrated. Maybe your DR can RX that for him. Vivian also had a great suggestion of seeing if you could get home health care to come in and do it. When my son was sick he had a PICC line for over a year and we had home health care for a while and then like Vivian, I took over and did it all myself. Its easy to do and he could be in his own comfy bed or chair. Either way he needs to stay as hydrated as possible. You get too dehydrated and it does some serious nasty damage! Now I know what I know I tell people "you don't want to die while trying to live do you?"

    In other words, you have to do your part too Mr. Patient!!!

    Oh and before I forget, you are free to a pity party anytime you wish! I promise you tho, your hubby probably won't even remember lashing out at you.

    Take good care of you! 

    Billie