New to Caregivers Board, been posting in Lung Cancer Board since March 2011

KLScoville
KLScoville Member Posts: 161 Member
edited September 2011 in Caregivers #1
Hello all,

Since March 2011 I have been posting in the Lung Cancer Board about my husband Mark who was diagnosed on 3/3/11 with NSCLC with mets all along his aorta (and probably other places according to the PET scan). Prognosis is 9 months without chemo. He doesn't want to do chemo. As I have been typing my story's/issues/concerns/problems/life as a caregiver I probably should of copied and pasted it on this discussion board as I am his caregiver. Please see my previous posts in the lung cancer board.

I have been reading all the caregivers postings and replies and have shed a few tears. My condolences to all caregivers that have lost a loved one and I am sorry for all the caregivers that are going through this as I am one of them. But we must stay strong for our counterparts/partners/friends/spouses/family. I have learned that you can't please everyone but at least try to the best of your ability to please the one you care for no matter how difficult it can get. Cancer is probably more difficult on the caregiver than it is the patient. You go through the same emotions but in a ten fold aspect. Plus now the caregiver has the everyday routine "chores around the house" that the patient once did. It is like having another full time job.

As a caregiver I am reaching out to all during the good times/news of the patients health and the bad times where venting is recommended and a great stress reliever. I have tried to do this with my friends (who are not caregivers at the present) but I feel as if they either "don't want to hear it" or just don't understand what I am going through. I know this board does and does. I appreciate all that will let me vent and I will do the same for you..listen with a caring ear.

Thanks for listening!
~Kelly

Comments

  • sue5749
    sue5749 Member Posts: 170
    #2
    thanks for all the responds
    Thanks so much for sharing! I feel so very alone. I hate talking with anybody about my husband cancer. I just feel all I do is complain, so I am just keeping everything inside. There is so much unanswered emotions that I am feeling inside. Don't want to talk to my husband, he is going though so much with his health. My sister will call once a week, she talks about her grandchildren, I am just not interested in all the every day things going on right now, I posted on here once that I finally had to get out of the house to go get my hair done and somebody on here said " I would be scared to death to leave my husband alone for ONE minute" OMG it has been one year since all this started, and I can't take one hour out of all this for me? Anyway he had his son sitting with him. I had my cell phone on me, if he needed me. I mean I am the one has to pick up all his prescriptions help with all his insulin shots, keep his doctor appts, give out all his meds that he needs. He has been in and out of the hospital in the last month 3 times. Some days I just cannot remember anything. Do I sound like I am complaining? Nobody knows, I could go on and on, but it is just very exhausting! I am just so very tired just thinking about it, so with that I will close. And remember DO NOT JUDGE UNLESS YE WILL BE JUDGED!
  • Barbara53
    Barbara53 Member Posts: 652
    #3
    sue5749 said:

    thanks for all the responds
    Thanks so much for sharing! I feel so very alone. I hate talking with anybody about my husband cancer. I just feel all I do is complain, so I am just keeping everything inside. There is so much unanswered emotions that I am feeling inside. Don't want to talk to my husband, he is going though so much with his health. My sister will call once a week, she talks about her grandchildren, I am just not interested in all the every day things going on right now, I posted on here once that I finally had to get out of the house to go get my hair done and somebody on here said " I would be scared to death to leave my husband alone for ONE minute" OMG it has been one year since all this started, and I can't take one hour out of all this for me? Anyway he had his son sitting with him. I had my cell phone on me, if he needed me. I mean I am the one has to pick up all his prescriptions help with all his insulin shots, keep his doctor appts, give out all his meds that he needs. He has been in and out of the hospital in the last month 3 times. Some days I just cannot remember anything. Do I sound like I am complaining? Nobody knows, I could go on and on, but it is just very exhausting! I am just so very tired just thinking about it, so with that I will close. And remember DO NOT JUDGE UNLESS YE WILL BE JUDGED!

    in yer business
    Sue, I can't believe someone criticised you for anything, muchless taking a couple of hours off. Of course, we caregivers are never really off because while we're getting errands done we worry about the patient back at home. You don't have to justify anything to us.
  • KLScoville
    KLScoville Member Posts: 161 Member
    #4
    sue5749 said:

    thanks for all the responds
    Thanks so much for sharing! I feel so very alone. I hate talking with anybody about my husband cancer. I just feel all I do is complain, so I am just keeping everything inside. There is so much unanswered emotions that I am feeling inside. Don't want to talk to my husband, he is going though so much with his health. My sister will call once a week, she talks about her grandchildren, I am just not interested in all the every day things going on right now, I posted on here once that I finally had to get out of the house to go get my hair done and somebody on here said " I would be scared to death to leave my husband alone for ONE minute" OMG it has been one year since all this started, and I can't take one hour out of all this for me? Anyway he had his son sitting with him. I had my cell phone on me, if he needed me. I mean I am the one has to pick up all his prescriptions help with all his insulin shots, keep his doctor appts, give out all his meds that he needs. He has been in and out of the hospital in the last month 3 times. Some days I just cannot remember anything. Do I sound like I am complaining? Nobody knows, I could go on and on, but it is just very exhausting! I am just so very tired just thinking about it, so with that I will close. And remember DO NOT JUDGE UNLESS YE WILL BE JUDGED!

    You are not alone
    Sue,

    I am right there with you and I feel for you. And no you don't sound like you are complaining, you are just "sounding off" and I know when I sound off I feel better. Whether it be talking to myself or God, in the shower, as tears are running down my face. I feel better. But doing it on your own and not having another ear to hear AND understand what you are going through is very frustrating. Of course you are trying to appease your sister by listening about her grandchildren as do I when my best friend calls with her life problems. Then, of course, during the conversation she asks, "And how are you doing?" and in a quiet voice you say "fine" with her not knowing exactly how you feel. You feel like screaming, punching, throwing something, crying, yelling, laughing hysterically and dancing because you have so many emotions going on right now you don't know which end is up. And if you actually act out those emotions the family might put you into the funny farm. That is not what you need.

    One day I was completely stressed (this past Monday). I mean a total basket case thinking that I couldn't do this anymore. Well I got past my stressful Monday (when I really needed an ear and couldn't find one) by crying all day long. As my husband has been sleeping alot lately so he never noticed. But I also kept myself busy by cleaning, praying, took a walk with my dogs and still cried the whole day through. Even mowed the lawn with tears streaming down my face. Tuesday morning I felt better, I don't understand why but I did. I felt as if I had a weight lifted off my shoulders. To this day I still don't understand why I felt better the next day. Maybe it was because I still had one more day with my husband and I better make them start counting before they become no more. When he does pass on it will be in God's time whether I am here or not. I just hope that I am but in order to keep him going I have to get out of the house and get things done for him and/or myself. I can't care for someone until I can take care of myself first. Just like you can't love someone until you love yourself first. As I sit here today I also realized (and this is the reason for my first post) that there are other people that feel the same way I do and we should all stick together because we are all going through it in one form or another being caregivers. It is a very difficult job being a caregiver but in the end all your efforts will be rewarded!! And you are right....DO NOT JUDGE, OR YOU TOO WILL BE JUDGED! Matthew 7:1

    By the way...bubble baths work too! Your still home just in a different room.

    Take care of yourself and vent at will!

    Thanks for listening!
    ~Kelly
  • sue5749
    sue5749 Member Posts: 170
    #5
    Barbara53 said:

    in yer business
    Sue, I can't believe someone criticised you for anything, muchless taking a couple of hours off. Of course, we caregivers are never really off because while we're getting errands done we worry about the patient back at home. You don't have to justify anything to us.

    thank you
    Thank you so much for your kind words! I guess I am just a little sensitive, maybe the person that said that to me is really going through a lot right now too. I have to learn to not get so upset so easily! It is just that it just hurt me at that time. You have made me feel better and for that I THANK YOU! sue
  • NayPaul
    NayPaul Member Posts: 230 Member
    #6
    no one right way....
    One thing I have learned is we all handle this slightly different, but we understand eachother, and allow eachother to express ourselvesbecause we r going through the same things. A friend or coworker may say the same thing as one of you, but I sometimes feel they don't get it. All that I know is that there is no one right way for us to feel. Alone, scared, empowered, helpless, an advocate, a friend, a nurse.... yep, we are caregivers!
  • MKJK64
    MKJK64 Member Posts: 1
    edited February 2017 #7
    KLScoville said:

    You are not alone
    Sue,

    I am right there with you and I feel for you. And no you don't sound like you are complaining, you are just "sounding off" and I know when I sound off I feel better. Whether it be talking to myself or God, in the shower, as tears are running down my face. I feel better. But doing it on your own and not having another ear to hear AND understand what you are going through is very frustrating. Of course you are trying to appease your sister by listening about her grandchildren as do I when my best friend calls with her life problems. Then, of course, during the conversation she asks, "And how are you doing?" and in a quiet voice you say "fine" with her not knowing exactly how you feel. You feel like screaming, punching, throwing something, crying, yelling, laughing hysterically and dancing because you have so many emotions going on right now you don't know which end is up. And if you actually act out those emotions the family might put you into the funny farm. That is not what you need.

    One day I was completely stressed (this past Monday). I mean a total basket case thinking that I couldn't do this anymore. Well I got past my stressful Monday (when I really needed an ear and couldn't find one) by crying all day long. As my husband has been sleeping alot lately so he never noticed. But I also kept myself busy by cleaning, praying, took a walk with my dogs and still cried the whole day through. Even mowed the lawn with tears streaming down my face. Tuesday morning I felt better, I don't understand why but I did. I felt as if I had a weight lifted off my shoulders. To this day I still don't understand why I felt better the next day. Maybe it was because I still had one more day with my husband and I better make them start counting before they become no more. When he does pass on it will be in God's time whether I am here or not. I just hope that I am but in order to keep him going I have to get out of the house and get things done for him and/or myself. I can't care for someone until I can take care of myself first. Just like you can't love someone until you love yourself first. As I sit here today I also realized (and this is the reason for my first post) that there are other people that feel the same way I do and we should all stick together because we are all going through it in one form or another being caregivers. It is a very difficult job being a caregiver but in the end all your efforts will be rewarded!! And you are right....DO NOT JUDGE, OR YOU TOO WILL BE JUDGED! Matthew 7:1

    By the way...bubble baths work too! Your still home just in a different room.

    Take care of yourself and vent at will!

    Thanks for listening!
    ~Kelly

    thanks

    Thanks so much my husband was diagnosed only a few weeks ago and bam one week later in hospital for blood clots tears just come at random moments throughout everyday right now i am so scared and angry and still in disbelief and we havent even got info on options yet  how am i going to make it through harder days 

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