What does a cancer patient want from their caregiver?

debbieg5
debbieg5 Member Posts: 167
edited March 2014 in Lung Cancer #1
Seeing as how most of you one here are the actual patients, perhaps you could give some advice for a caregiver. Particularly, how to encourage the cancer patient to do the necessary things to fight the cancer.

My husband started fighting this last episode of cancer in April. (in throat, close to larynx). He has had a defeated attitude from the beginning and I believe has probably been medically depressed for quite some time. "Of course, I'm depressed; I have cancer", is what he would tell me when I broached the subject. He has not been a "good" patient from the beginning. Things have gone from bad to worse. Had radiation/chemo which did not kill the cancer. then had a laryngectomy/neck dissection/free flap. Didn't appear to be recovering as he should from that and recent biopsy showed cancer returned at base of tongue. Now, PET reveals something in the lungs. His physical/mental state is abysmal. I know most of it is because of the extreme pain that he has been in for so long.
I have tried to remain sympathetic, yet upbeat as this all went on. I (and other family members) have tried to encourage him but he just seems to draw further into his shell. When I try to tell him that he must have a better attitude and be pro-active about his health, he gets mad at me.

How does the cancer patient perceive all this? Where do they feel the line is between a caregiver trying to remind them to do the proper things (take meds, exercise, etc)and the caregiver being a nag. Sometimes I just want to give up and let him be but then I just can't sit back and watch him die without trying to help him. I just feel like I never give him what he needs.
Help! This is so hard.
debbie

Comments

  • stayingcalm
    stayingcalm Member Posts: 650 Member
    #2
    From one Deb to another
    You are a good caregiver, you are not a nag ;-) It may just be hard to be reminded all the time that he needs a caregiver, and why he needs one. He's probably scared. I needed to hear my boyfriend tell me everything would be alright, for a long time before I began to believe it. I don't really know what your husband needs, only he does...maybe if you back off on reminding him about things he'll be more inclined to do them himself?

    Is he on an anti-depressant or mood elevator like Xanax? He might benefit from something like that (if you could convince him!). The generic version of Xanax are the kind that can be taken as needed and split to make lower dosages.

    I hope this gets better for him, sounds like he's had a pretty rough ride and is spreading the joy ;-0. Hopefully it will get better for you, too!

    stayingcalm
  • JohnBinDC
    JohnBinDC Member Posts: 91 Member
    #3
    I wish you well
    Debbie, I am new to this and am going through a roller coaster of emotions at this point. In the past few years I have been diagnosed with Multiple Sclerosis and now lung cancer. From my perspective, I do not want to be treated like a victim, or a disease, but as a person who is the same as before, but with a new fight on their hands. I go through some guilt of my own that I have not treated people in my life better, but I cannot go back in time, I can only try to do better today. This may not be relative, but my point is these thoughts can cause a bit of bitterness on my part, if I let them persist. To combat that, I need to stick with positive people who are in the same boat as I.

    My only suggestion is to make sure you take the time to take care of yourself. If you don't have an outlet for yourself, perhaps a local support group for caregivers may be helpful. I work with wounded, ill, and injured Servicemembers and I see the their caregivers (spouses, parents and siblings) go through very difficult times. It is not easy to be a caregiver! Humor is important for me and I will sometimes get a favorite old comedy movie and watch it just so we can spent time laughing together.

    I wish you and your husband the very best.

    John
  • hope0310
    hope0310 Member Posts: 320
    #4
    JohnBinDC said:

    I wish you well
    Debbie, I am new to this and am going through a roller coaster of emotions at this point. In the past few years I have been diagnosed with Multiple Sclerosis and now lung cancer. From my perspective, I do not want to be treated like a victim, or a disease, but as a person who is the same as before, but with a new fight on their hands. I go through some guilt of my own that I have not treated people in my life better, but I cannot go back in time, I can only try to do better today. This may not be relative, but my point is these thoughts can cause a bit of bitterness on my part, if I let them persist. To combat that, I need to stick with positive people who are in the same boat as I.

    My only suggestion is to make sure you take the time to take care of yourself. If you don't have an outlet for yourself, perhaps a local support group for caregivers may be helpful. I work with wounded, ill, and injured Servicemembers and I see the their caregivers (spouses, parents and siblings) go through very difficult times. It is not easy to be a caregiver! Humor is important for me and I will sometimes get a favorite old comedy movie and watch it just so we can spent time laughing together.

    I wish you and your husband the very best.

    John

    Caregiver
    I was one of my moms caregivers along with my stepdad and brother. I too felt her frustration when we would tell her she needed to eat more, do therapy...etc. You are right though, we cannot sit idle and watch them wither away without giving it our all to help them succeed.

    It is a gentle balance.

    I think listening to them, their fears, concerns etc are very important. I found myself saying ..."ok, tell me more so I can better understand"...in order to keep mom talking. Obviously, saying I know how you feel is the wrong answer, so I would use statements to keep her moving forward.

    Like John said, you do need to take care of yourself as well, I can say that, but cannot say that I did.

    My best to you and your husband.....there is no right or wrong way to be a caregiver.

    Elysia
  • debbieg5
    debbieg5 Member Posts: 167
    #5
    stayingcalm said:

    From one Deb to another
    You are a good caregiver, you are not a nag ;-) It may just be hard to be reminded all the time that he needs a caregiver, and why he needs one. He's probably scared. I needed to hear my boyfriend tell me everything would be alright, for a long time before I began to believe it. I don't really know what your husband needs, only he does...maybe if you back off on reminding him about things he'll be more inclined to do them himself?

    Is he on an anti-depressant or mood elevator like Xanax? He might benefit from something like that (if you could convince him!). The generic version of Xanax are the kind that can be taken as needed and split to make lower dosages.

    I hope this gets better for him, sounds like he's had a pretty rough ride and is spreading the joy ;-0. Hopefully it will get better for you, too!

    stayingcalm

    moods
    Thanks, Deb. He tried Zoloft a couple of weeks ago for about 3 days but was having some strange side effects. Now he has been on Lexapro for 1 week. My understanding is that it takes a while for these to kick in. He needed to have been on something 6 months ago.

    I try to show sympathy and care but I have told him that I am not joining his pity party.We are going to see the oncologist and ENT this afternoon to discuss their ideas on what they see on the PET. I guess I was ugly just now because I told him that chemo or any other treatment was going to be a waste of time if he really had no willpower to try to get better.
    this is a very fine line to walk!
    Debbie
  • debbieg5
    debbieg5 Member Posts: 167
    #6
    JohnBinDC said:

    I wish you well
    Debbie, I am new to this and am going through a roller coaster of emotions at this point. In the past few years I have been diagnosed with Multiple Sclerosis and now lung cancer. From my perspective, I do not want to be treated like a victim, or a disease, but as a person who is the same as before, but with a new fight on their hands. I go through some guilt of my own that I have not treated people in my life better, but I cannot go back in time, I can only try to do better today. This may not be relative, but my point is these thoughts can cause a bit of bitterness on my part, if I let them persist. To combat that, I need to stick with positive people who are in the same boat as I.

    My only suggestion is to make sure you take the time to take care of yourself. If you don't have an outlet for yourself, perhaps a local support group for caregivers may be helpful. I work with wounded, ill, and injured Servicemembers and I see the their caregivers (spouses, parents and siblings) go through very difficult times. It is not easy to be a caregiver! Humor is important for me and I will sometimes get a favorite old comedy movie and watch it just so we can spent time laughing together.

    I wish you and your husband the very best.

    John

    Hi John, I saw from another
    Hi John, I saw from another post that we are both in the DC metro area. You said that you are going to Walter Reed right now. Make sure you try some food there some time. A good friend of ours is the head of the food area and hopefully what he makes there is as good as what he makes at our church functions.

    You know, you used the term "victim". I think that's what my husband acts like sometime. He has never smoked in his life but yet got cancer in his throat and on his tongue. He has fought a lot with anger and the "why me" syndrome during this. I keep waiting for the fighting side of him to emerge but I think it is buried under too much pain.

    good luck with your journey and we will keep in touch.
    Debbie
  • debbieg5
    debbieg5 Member Posts: 167
    #7
    hope0310 said:

    Caregiver
    I was one of my moms caregivers along with my stepdad and brother. I too felt her frustration when we would tell her she needed to eat more, do therapy...etc. You are right though, we cannot sit idle and watch them wither away without giving it our all to help them succeed.

    It is a gentle balance.

    I think listening to them, their fears, concerns etc are very important. I found myself saying ..."ok, tell me more so I can better understand"...in order to keep mom talking. Obviously, saying I know how you feel is the wrong answer, so I would use statements to keep her moving forward.

    Like John said, you do need to take care of yourself as well, I can say that, but cannot say that I did.

    My best to you and your husband.....there is no right or wrong way to be a caregiver.

    Elysia

    Caregiver blues
    Yes, we hear it from everyone and we know that we need to take care of ourselves but, boy is it hard to do. Luckily, we do have a lot of support from church friends, family and neighbors. It is especially needed since I have 2 boys still at home and sometimes just can't quite coordinate their schedules with our doctor appointments.

    One of the problems right now is that my husband cannot easily share his thoughts and feelings because of his laryngectomy. that causes even more frustration on his part because he can't communicate effectively. I just told him to sit down and write me a letter describing what he was feeling at what his fears were. He probably won't.

    I just discovered last night that there is a specific Caregiver thread on here. I guess I'll post this there next time.
    Thanks for your insight.
    Debbie
  • JohnBinDC
    JohnBinDC Member Posts: 91 Member
    #8
    debbieg5 said:

    Hi John, I saw from another
    Hi John, I saw from another post that we are both in the DC metro area. You said that you are going to Walter Reed right now. Make sure you try some food there some time. A good friend of ours is the head of the food area and hopefully what he makes there is as good as what he makes at our church functions.

    You know, you used the term "victim". I think that's what my husband acts like sometime. He has never smoked in his life but yet got cancer in his throat and on his tongue. He has fought a lot with anger and the "why me" syndrome during this. I keep waiting for the fighting side of him to emerge but I think it is buried under too much pain.

    good luck with your journey and we will keep in touch.
    Debbie

    Debbie - Have tried the food!
    Debbie, I have tried the food at Walter Reed and it was good. (except after a major surgery when all they tried to feed me was cream soup -- Yuk!)

    One way I look at my situation is that if I become too bitter about it, then I am punishing myelf. As it is, I have MSand Cancer and I do not need to go around being bitter because then I will just add to the pain. This stuff can be enough pain without me adding to it with further mental anguish and a sour stomach! I try to focus outwardly as much as possible; how can I help the clerk to smile?, what value do I bring to the people I contact? If I think like that, then I have small respites from my own troubles. If I told you I do this all the time, I would be full of it! But when I can focus on doing some good for other folks, I feel better.

    I wish you and and you husband the very best! Remember to have some fun!

    John
  • debbieg5
    debbieg5 Member Posts: 167
    #9
    JohnBinDC said:

    Debbie - Have tried the food!
    Debbie, I have tried the food at Walter Reed and it was good. (except after a major surgery when all they tried to feed me was cream soup -- Yuk!)

    One way I look at my situation is that if I become too bitter about it, then I am punishing myelf. As it is, I have MSand Cancer and I do not need to go around being bitter because then I will just add to the pain. This stuff can be enough pain without me adding to it with further mental anguish and a sour stomach! I try to focus outwardly as much as possible; how can I help the clerk to smile?, what value do I bring to the people I contact? If I think like that, then I have small respites from my own troubles. If I told you I do this all the time, I would be full of it! But when I can focus on doing some good for other folks, I feel better.

    I wish you and and you husband the very best! Remember to have some fun!

    John

    outlook
    John, it sounds like you have a great outlook on life in spite of what is going on with you medically. I am sure this will serve you well as you approach this next battle.

    I guess I wish that was the spirit that my husband had so I could walk along beside him and cheer him on. As it is, I feel like I'm trying to drag him most of the time. There is no having fun on his part right now. He seems to barely be able to make it through a day now and sometimes acts like he is just in some kind of trance.

    Perhaps the upcoming treatments will relieve some pain and he will return to being a human again.
    Debbie

    ps. I'll pass yur compliments on to Chef Ted.
  • dave51
    dave51 Member Posts: 1
    #10
    I have only been fighting
    I have only been fighting cancer since July. In that amount of time I have learned that anything is possible. If your husband will continue to take the anti-depressant it will definitely help him cope. Most of the meds prescribed are SSRIs which means selective seritonin reuptake inhibitors. It will take 4-6 weeks before they take full effect but they do help. You will notice changes before he does if they are working. If he is on the right one, it will be like a giant weight lifted off his shoulders. Please encourage him to keep taking them. Good luck. Remember also that you have to take care of yourself during this time. Don't let anything keep you from beleiving in a positive outcome.

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