Balancing guilt with sanity

VivianLee5689
VivianLee5689 Member Posts: 546
in Head and Neck Cancer #1
Ok this caregiver job is so hard. Watching my beloved husband in pain, losing weight and miserable at times is so hard. I find myself sitting alone in the house for hours while he sleeps. He is such a light sleeper I can't even vacuum or clean the house so I sit around a lot more than I am used to. I have had so much anxiety with the cancer, losing the baby, worries about the house and now my job is even giving me fits. I forgot about myself somewhere along the way and have a long standing problem of martyring myself in times of need. I cry myself to sleep almost every night, missing my husband's kiss or even hugs. I rarely have any physical contact with anyone and it has been very difficult. Well last night after David telling me I really needed a night of ballroom dancing and my dance instructor pleading for me to come. I put on makeup, did my hair and took my dancing shoes. I went dancing for two hours with some of my best friends. It was so nice to feel human contact and know I was in a safe place. Yes today I am back in my lonely house, but last night was so good for me. I am praying for all you caregivers out there. It's a hard job. I know our loved ones have it worse, which sometimes makes me feel like if it is this bad for me. Oh well not going down that road, but just want everyone to try to take care of yourself through this journey. You need to take care of you as well.

Comments

  • boardwalkgirl
    boardwalkgirl Member Posts: 269
    #2
    You need to take some time
    You need to take some time for you too. I told my husband that I think being the caregiver would be worse than being the patient in a lot of ways. He was so wonderful to me thru out everything and still is my support system but I know it was very hard. I know he always thought I was in more pain than I was, wanted to do something to make me feel better but didn't know what to do. I know I would rather be the one going thru it than watch him go thru it. You have had so much thrown at you in such a short time, more than anyone should so take some time for you. My prayers go out to you and your husband.
  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #3
    it is not easy
    Vivian,

    You are both on separate but equally difficult roads which will hopefully tie back in together when treatments are over. Not wanting to sound to old and fuddy-duddy, but going through this in our 50’s is probably easier than when we were younger (I no longer have a garage full of toys). You definitely need to find time for yourself and a way to rejuvenate and be happy. It is important to stay upbeat for your husband during his treatments; he may already be feeling guilty for bringing this on the two of you. This is real life, the big leagues, it’s hard and it is messy. Hopefully, at this time next year (or much sooner) things will be heading back to normal.

    Best,

    Matt
  • Hard12Find
    Hard12Find Member Posts: 218 Member
    #4
    Vivianne
    I am glad you got a night out, we all need a break. For what it is worth, I sometimes feel over cared for to the point where it gets annoying, and I get grumpy...
    i guess what I am saying is when David is doing relatively well take time for yourself, and when he needs you be there......it will help you both remane as sane as possible. As for guilt, it's a wasted emotion sent from satan himself ( unless you truly have something to be remorseful for). Let it go, you have too many other things to carry right now. If you are remorseful for something valid, it too can be laid at the feet of Jesus, and he will carry it for you (he already has). All we need to do to receive forgiveness is to ask of Jesus, and repent from that sin the best we can, after all we are only human. Keeping you and David in my prayers, and I know Tim is as well. End of three weeks of treatment for me, and having a better week the last couple days, struggling with nutrition, hydration and nausea....Hang in there we are all still on the bus with you.....
    The way I see it the caregivers job is much harder than the patient, mostly due to the fact when you are the one told you have cancer, you get a real perspective change, and many things don't seem to bother you as much or seem as important as they did. FWIW
    Your brother in Christ,
    Jim
  • Pumakitty
    Pumakitty Member Posts: 652
    #5
    I understand
    Hi Vivian,

    I can understand some of what you are going through. Mom and I are the caregivers for my father. He was diagnosised almost 2 years ago with BOT. He has had one reoccurance. He is very different now then he was when he was first diagnosised. I think the last treatment took a real toll on him mentally and physically. He sleeps at least 20 hours a day and when he is up he does not talk with mom or I. So I know mom and relate to being lonley. I forget about taking care of myself also and then when I do I feel gulity.
    I am glad you got out and had some fun. I am waiting right now for a Halloween party to start. They are expecting over 200 kids and I love to help. I feel like I should be home, but Mom wanted to do this.

    I know dad does not mean the negative things he says and I try not to take them personally. There is the constant worry about him and my mom who has had some minor health problems during this time.

    Please try to find some time for yourself and also know that you are not alone in how you feel.

    Kathy
  • luvofmylif
    luvofmylif Member Posts: 344
    #6
    Pumakitty said:

    I understand
    Hi Vivian,

    I can understand some of what you are going through. Mom and I are the caregivers for my father. He was diagnosised almost 2 years ago with BOT. He has had one reoccurance. He is very different now then he was when he was first diagnosised. I think the last treatment took a real toll on him mentally and physically. He sleeps at least 20 hours a day and when he is up he does not talk with mom or I. So I know mom and relate to being lonley. I forget about taking care of myself also and then when I do I feel gulity.
    I am glad you got out and had some fun. I am waiting right now for a Halloween party to start. They are expecting over 200 kids and I love to help. I feel like I should be home, but Mom wanted to do this.

    I know dad does not mean the negative things he says and I try not to take them personally. There is the constant worry about him and my mom who has had some minor health problems during this time.

    Please try to find some time for yourself and also know that you are not alone in how you feel.

    Kathy

    I have often thought also is
    I have often thought also is would be easier if I were the one with cancer. Matt is right...this is the big leagues. This is were true love is really tested. Cancer changes everything and I mean everything and no one understands unless you go through it. My husband sleeps alot also and doesn't feel well when awake so it can be lonely. The dynamic of what used to be is changed but I know that no matter what I would not change where I am at. I always think how would it be if the tables were turned and my husband would be there for me every step of the way.

    But, give it time ...things will get better , I know that. It's the "dog days" right now, but they won't last forever. Just know also, Vivian , that you are normal and that you are not alone. I have had much trouble coping with everything especially the thought that my husband could die. I am so scared but trying not to be.

    So, take care of yourself along the way and continue to use this forum for advice and support. These people are very wise and caring. They offer technical support and human support as well and I already feel like I owe them so much. I send prayers to you and your husband and all on this support site .

    Joan
  • phrannie51
    phrannie51 Member Posts: 4,716
    #7
    Wonderful!! Your part of the journey IS harder....
    Caring for a very sick partner in life, is a lonely job. I'm so glad you took the shoes and went out dancing, saw friends, got to talk about something other than medicines, treatments, cancer, etc etc....I was insistant that my husband still meet his cronies for lunch on Saturdays, still attend his planning board meetings, go to AA, get out of this house. I was sleeping, and I was more than able to pour something down my tube, or watch TV. He was never gone more than a couple hours at a time, but it got him away from cancer (which is all we think about in one form or another from the day of Dx). So...what I'm saying...DO take care of yourself. Lunch with the girls, an evening of dancing is good for you, and in turn good for your husband.

    Think of it this way...who'd want an insane caregiver? :) Thinking of nurse Ratchet in One Flew Over the Cuckoo's Nest...LOLOLOL. It behooves us, the sick ones, to allow the caretaker to care for self.

    p
  • ToBeGolden
    ToBeGolden Member Posts: 695
    #8
    Zorba
    I always liked that old movie: Zorba the Greek. At the end, when the whole world collapsed, the two of them just got up and danced. In truth, what else is there? Rick.
  • ditto1
    ditto1 Member Posts: 660
    #9
    ToBeGolden said:

    Zorba
    I always liked that old movie: Zorba the Greek. At the end, when the whole world collapsed, the two of them just got up and danced. In truth, what else is there? Rick.

    What ever it takes Vivian
    to keep your head on straight. Nothing about this disease is fair, from the one who gets it to the ones that have to be the caretaker. I have no idea why God works in mysterious ways but we all agree he does, and you both are already sharing a stronger love than many couples ever feel in relationships that they have been in for years. Is it fair, HECK NO, but when you and your spouse celebrate your 25th anniversary you will look way back to this time in your lives and smile at the blessing it was. PS, P51 has been promoting dancing around the kitchen from day one, so if you cannot get out, give it a try Im sure it works.
  • NoDuck
    NoDuck Member Posts: 134
    #10
    phrannie51 said:

    Wonderful!! Your part of the journey IS harder....
    Caring for a very sick partner in life, is a lonely job. I'm so glad you took the shoes and went out dancing, saw friends, got to talk about something other than medicines, treatments, cancer, etc etc....I was insistant that my husband still meet his cronies for lunch on Saturdays, still attend his planning board meetings, go to AA, get out of this house. I was sleeping, and I was more than able to pour something down my tube, or watch TV. He was never gone more than a couple hours at a time, but it got him away from cancer (which is all we think about in one form or another from the day of Dx). So...what I'm saying...DO take care of yourself. Lunch with the girls, an evening of dancing is good for you, and in turn good for your husband.

    Think of it this way...who'd want an insane caregiver? :) Thinking of nurse Ratchet in One Flew Over the Cuckoo's Nest...LOLOLOL. It behooves us, the sick ones, to allow the caretaker to care for self.

    p

    My Nickname
    As caregiver to my hubby, my nicknames during treatment was "Nurse Nagger." A couple of times I got close to "Nurse Ratchet."

    The patient and the caregiver are both on a very tough journey. Hubby always said his was easier than mine because he slept a lot and he got drugs. We had a four hour round trip drive every day to treatment so we were both exhausted every day. The tough part for me was being strong all the time. Before the cancer dx, I had a reputation for being a tough woman -- I own my own business and spent last year as the statewide leader of my professional organization. After the dx, everyone said we would get through this because we are tough. I didn't feel very tough sometimes. But cancer will make you reach down and grab a strength, a courage and a faith you never knew you had before.

    The strength, courage and faith you need to get you and your husband through this is there. Reach down and grab it.

    Deb
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #11
    ditto1 said:

    What ever it takes Vivian
    to keep your head on straight. Nothing about this disease is fair, from the one who gets it to the ones that have to be the caretaker. I have no idea why God works in mysterious ways but we all agree he does, and you both are already sharing a stronger love than many couples ever feel in relationships that they have been in for years. Is it fair, HECK NO, but when you and your spouse celebrate your 25th anniversary you will look way back to this time in your lives and smile at the blessing it was. PS, P51 has been promoting dancing around the kitchen from day one, so if you cannot get out, give it a try Im sure it works.

    I remember my wife bursting into tears one time...
    She was so upset with herself for going to her 1 hour zumba class. I was shocked?! I had no idea she was under such pressure / guilt ....here is what I told her (and I bet your husband was thinking along these lnes) ..

    I said "I know it's just as hard being a caregiver and for a bit longer a single mom to our five kids, but I want you to take care of you too. If you keep the kids and yourself togehter...that helps me fight"! I did not want to see my wife and kids sitting around and wondering if dad was going to make it or not ...and I told them so!! I'll be here at the end of this you can't get rid of me that easy..and if I am wrong, I told them, then the last thing I want to see as I'm leaving this good earth is my family in gloom...now get up and let's go going with life!!

    It worked out pretty well for us .....you take great care of your husband ...but to continue to do that you have to have some time Vivian ....taking care of you IS taking care of him too! :)

    Best,

    You are in my prayers!

    Tim
  • VivianLee5689
    VivianLee5689 Member Posts: 546
    #12
    Tim6003 said:

    I remember my wife bursting into tears one time...
    She was so upset with herself for going to her 1 hour zumba class. I was shocked?! I had no idea she was under such pressure / guilt ....here is what I told her (and I bet your husband was thinking along these lnes) ..

    I said "I know it's just as hard being a caregiver and for a bit longer a single mom to our five kids, but I want you to take care of you too. If you keep the kids and yourself togehter...that helps me fight"! I did not want to see my wife and kids sitting around and wondering if dad was going to make it or not ...and I told them so!! I'll be here at the end of this you can't get rid of me that easy..and if I am wrong, I told them, then the last thing I want to see as I'm leaving this good earth is my family in gloom...now get up and let's go going with life!!

    It worked out pretty well for us .....you take great care of your husband ...but to continue to do that you have to have some time Vivian ....taking care of you IS taking care of him too! :)

    Best,

    You are in my prayers!

    Tim

    Much thanks
    Thank you everyone for your words of encouragement. I do want to be a good wife to David, but it is so hard sitting here quietly day after day. It seems that every little sound bothers him these days so I try to tip toe around. I guess in my head I thought these were supposed to be our better days before chemo/radiation, but if that is true it's going to get super tough. I appreciate everyone's willingness to listen and give support. Some days you are they only interaction I have.
    Vivian
  • hwt
    hwt Member Posts: 2,328 Member
    #13
    VivianLee5689 said:

    Much thanks
    Thank you everyone for your words of encouragement. I do want to be a good wife to David, but it is so hard sitting here quietly day after day. It seems that every little sound bothers him these days so I try to tip toe around. I guess in my head I thought these were supposed to be our better days before chemo/radiation, but if that is true it's going to get super tough. I appreciate everyone's willingness to listen and give support. Some days you are they only interaction I have.
    Vivian

    Vivian
    Does your husband have needs while he is sleeping? Is he on heavy pain meds that put him at risk for a fall? Guess I'm asking if you really need to be there all of the time he is sleeping. I know when my sisters insisted my husband take a break, I felt good about it. Make sure you have some daily interaction with the outside world. If you go for a half hour walk with a phone by David and a phone in your pocket it can do you a world of good.
  • ToBeGolden
    ToBeGolden Member Posts: 695
    #14
    VivianLee5689 said:

    Much thanks
    Thank you everyone for your words of encouragement. I do want to be a good wife to David, but it is so hard sitting here quietly day after day. It seems that every little sound bothers him these days so I try to tip toe around. I guess in my head I thought these were supposed to be our better days before chemo/radiation, but if that is true it's going to get super tough. I appreciate everyone's willingness to listen and give support. Some days you are they only interaction I have.
    Vivian

    Cell Phone?
    If you had a cell phone that David could call, you might be able to get out of the house while he sleeps. Even if he could not talk, you would know that it is David and go back home. You might go for a walk (or a little drive) where you would not be more than ten minutes away.

    I am the patient, and I'm in a good part of the journey right now. I find getting out of the house for a short walk does my mood a great deal of good. Because of my energy level, my walks seldom are longer than 15 minutes. However, even such a short walk does me good. There is a park with a bench less than 5 minutes from my home. Perhaps, there is a bench near your home too. If not, there is always the curb. Even if the police stopped and asked what you were doing, you would have a good story to tell. (I'm thinking some communities have laws against people sitting on the sidewalks and like.)

    Finally, I must add once again: a lot of medications affect the patient's mood. Almost anything can have a poor effect. But David does need the medications, and I'm not suggesting that he should not take what he needs. All I'm trying to suggest is that you might not be seeing the "real David". I hope I have not spoken too much out of turn. Rick.

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