I'm new here

Sunflower
Sunflower Member Posts: 12
edited March 2014 in Caregivers #1
I've been a member since last year, but I haven't been an active participant until now...I don't even know where to start...I guess I'm just looking for support and friendship from other people in my situation and this seems like a great place! I've been reading some of the other posts and there's some really great advice and information. It's comforting to know that I'm not alone.

My husband was diagnosed with colon cancer in 2003 and after a year of chemo he was in remission. In October 2007 we were told that it was back, this time stage IV and had spread to other organs. A few weeks ago we were told that there's nothing more the doctors can do for him. So, no more chemo, and now I don't really know what to expect. I've seen him gradually decline, simple tasks and activities wear him out quickly, he's lost weight, etc... Sometimes I feel like I'm dealing with someone else in my husband's body because of the things he says or does. It's like we're losing him slowly before we lose him physically. I feel like cancer has robbed us of so many things and I know I don't need to tell you guys how much cancer sucks!

There are some days when I really struggle with all of this. I'm just trying to take things day by day. If I get ahead of myself and start thinking about life without him and how my daughter and I will cope once he's gone--that's when I start having a pity-party for myself.

I noticed there's a caregiver's chat on Tueday and I'm planning on being there. :)

Liz

Comments

  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #2
    what to do
    Liz, you have my admiration, as well, I am sure, as the admiration of many survivors for your pivotal role in caring for your husband. To mind, caring for a loved one is the most difficult job anyone could be asked to do.

    I salute you for your effort.

    I am a survivor (twice) and also the son of a brave and wonderful woman who died from metastasis of breast cancer to her brain (more than 20 years later).

    For what it's worth, I would advise that at some point, you will want to consider home hospice. Some folks suggest that institutional hospice is fine, but having been with my mom in her last days at home, and knowing what my own preferences would be -- to stay home -- I would, again, suggest that there will come a time when you will need additional support, and I would advise that you begin looking into home hospice now.

    I have one more important suggestion: to be a good caregiver, you must take good care of the giver! Be sure to get out and do the kinds of activities you enjoy doing. If you feel like therapy would help, do not consider it beneath you; having someone to talk to on a regular basis can be instrumental to maintaining your good mental health in this time of crisis and tragedy.

    Take care of youself! My wife's friends, when I was in the hospital for nearly 30 days, would come and rescue her from me, so to speak, take her to lunch, give her that break she needed, as short as it might be, recharge her batteries. You need this.

    I recommend that caregivers chat highly. Please know that the chat room is open to you all of the time, that caregivers are not just pushed into a room for an hour once a week. There are many caregivers who are regular visitors to the chat room, some of them daily. So do not hesitate to come in to the chat room at any time you so desire. The people in there are there to share, to commiserate, and to help.

    Best wishes to your husband, to you, and to your family, Liz.

    Take care,

    Joe
  • smarty1
    smarty1 Member Posts: 1
    #3
    I am new here
    Dear Liz,

    I am also new here. My husband was diagnosed with pancreatic cancer last July. He had surgery. The surgeon said he got all the cancer, but then he went to an oncologist and he said it was stage 3 and in the limpnodes and said chemo would do no good. Our dr. advises against any scans and my husband and I agree, but he is in deep depression. I work 4 days a week, but he is in so much pain, he sleeps all the time. I do pray a lot. I believe in God and know that he is the one that will take care of us. I hope to talk to you again soon. E-mail me and I will respond. I also want to join that chat group, the only problem is I work on the computer all day and am so tired at night. I only usually go on the weekends. But I could try.

    Karen
  • Sunflower
    Sunflower Member Posts: 12
    #4
    soccerfreaks said:

    what to do
    Liz, you have my admiration, as well, I am sure, as the admiration of many survivors for your pivotal role in caring for your husband. To mind, caring for a loved one is the most difficult job anyone could be asked to do.

    I salute you for your effort.

    I am a survivor (twice) and also the son of a brave and wonderful woman who died from metastasis of breast cancer to her brain (more than 20 years later).

    For what it's worth, I would advise that at some point, you will want to consider home hospice. Some folks suggest that institutional hospice is fine, but having been with my mom in her last days at home, and knowing what my own preferences would be -- to stay home -- I would, again, suggest that there will come a time when you will need additional support, and I would advise that you begin looking into home hospice now.

    I have one more important suggestion: to be a good caregiver, you must take good care of the giver! Be sure to get out and do the kinds of activities you enjoy doing. If you feel like therapy would help, do not consider it beneath you; having someone to talk to on a regular basis can be instrumental to maintaining your good mental health in this time of crisis and tragedy.

    Take care of youself! My wife's friends, when I was in the hospital for nearly 30 days, would come and rescue her from me, so to speak, take her to lunch, give her that break she needed, as short as it might be, recharge her batteries. You need this.

    I recommend that caregivers chat highly. Please know that the chat room is open to you all of the time, that caregivers are not just pushed into a room for an hour once a week. There are many caregivers who are regular visitors to the chat room, some of them daily. So do not hesitate to come in to the chat room at any time you so desire. The people in there are there to share, to commiserate, and to help.

    Best wishes to your husband, to you, and to your family, Liz.

    Take care,

    Joe

    what to do
    Joe,
    You have my admiration too--you're doing the hard part by being brave enough to battle cancer. I'm not sure I would do so well on your side of the situation.

    You have very good suggestions and I appreciate you taking the time to share your experiences with me. I need all the help I can get! :)

    My husband goes back to the oncologist later this month, and I believe we'll talk about hospice then. He's a veteran and the VA will provide hospice care for us.

    You are so right about taking care of myself. I've really struggled with depression lately, and I do see a therapist about once a month, but I think I need to see her more often at this point. I took your advice and went for a walk this afternoon, and I did feel better when I got home.

    All of this is so hard and my "regular" friends aren't able to relate as well as you guys.
    I've been real scared lately about how I'll cope when he's gone, and after reading some of the other discussions it's eased my fears some.

    Take care,
    Liz
  • Sunflower
    Sunflower Member Posts: 12
    #5
    smarty1 said:

    I am new here
    Dear Liz,

    I am also new here. My husband was diagnosed with pancreatic cancer last July. He had surgery. The surgeon said he got all the cancer, but then he went to an oncologist and he said it was stage 3 and in the limpnodes and said chemo would do no good. Our dr. advises against any scans and my husband and I agree, but he is in deep depression. I work 4 days a week, but he is in so much pain, he sleeps all the time. I do pray a lot. I believe in God and know that he is the one that will take care of us. I hope to talk to you again soon. E-mail me and I will respond. I also want to join that chat group, the only problem is I work on the computer all day and am so tired at night. I only usually go on the weekends. But I could try.

    Karen

    I am new here
    Karen,
    I'm sorry to hear about your husband's diagnosis. I think we've both come to the right place for advice and support. My husband is also depressed. They've offered him anti-depressants, but he refuses to take them--go figure! It sounds like our hubby's are both in a lot of pain, and like yours, mine has been sleeping a lot as well. He still tries to do things, but gets tired easily.

    I've also put my faith in God, and I know in my heart that everything will be alright. It's the journey between here and there that scares me. I haven't worked in several years, but I'll have to get a job once Buster's gone. How am I supposed to find a job in the worst time of my life. I'm sure maintaining a job, in your case, during the worst time of your life is equally difficult.

    We need to take things one day at a time, stay strong, take care of ourselves like Joe advised. I'll be here for you, so write me anytime. I'm still figuring this site out. I know there's a way to email privately, but I'm not sure how to get there...

    I hope you can join the discussion group Tuesday at 6:00 CST.

    Take care,
    Liz
  • CanadaSue
    CanadaSue Member Posts: 339 Member
    #6
    Sunflower said:

    I am new here
    Karen,
    I'm sorry to hear about your husband's diagnosis. I think we've both come to the right place for advice and support. My husband is also depressed. They've offered him anti-depressants, but he refuses to take them--go figure! It sounds like our hubby's are both in a lot of pain, and like yours, mine has been sleeping a lot as well. He still tries to do things, but gets tired easily.

    I've also put my faith in God, and I know in my heart that everything will be alright. It's the journey between here and there that scares me. I haven't worked in several years, but I'll have to get a job once Buster's gone. How am I supposed to find a job in the worst time of my life. I'm sure maintaining a job, in your case, during the worst time of your life is equally difficult.

    We need to take things one day at a time, stay strong, take care of ourselves like Joe advised. I'll be here for you, so write me anytime. I'm still figuring this site out. I know there's a way to email privately, but I'm not sure how to get there...

    I hope you can join the discussion group Tuesday at 6:00 CST.

    Take care,
    Liz

    Liz
    I have sent you an e-mail, please check.

    Hugs,

    Sue
  • angelsbaby
    angelsbaby Member Posts: 1,165 Member
    #7
    Sunflower said:

    I am new here
    Karen,
    I'm sorry to hear about your husband's diagnosis. I think we've both come to the right place for advice and support. My husband is also depressed. They've offered him anti-depressants, but he refuses to take them--go figure! It sounds like our hubby's are both in a lot of pain, and like yours, mine has been sleeping a lot as well. He still tries to do things, but gets tired easily.

    I've also put my faith in God, and I know in my heart that everything will be alright. It's the journey between here and there that scares me. I haven't worked in several years, but I'll have to get a job once Buster's gone. How am I supposed to find a job in the worst time of my life. I'm sure maintaining a job, in your case, during the worst time of your life is equally difficult.

    We need to take things one day at a time, stay strong, take care of ourselves like Joe advised. I'll be here for you, so write me anytime. I'm still figuring this site out. I know there's a way to email privately, but I'm not sure how to get there...

    I hope you can join the discussion group Tuesday at 6:00 CST.

    Take care,
    Liz

    MINE TOO
    MY HUSBAND IS DYING ALSO. LOSING WEIGHT VOMITING IT IS SO SAD FOR ME TO SEE HIM LIKE THIS. I LOVE HIM VERY MUCH BUT I AM LIMITED ON HOW MUCH HELP I CAN GIVE HIM HE ALSO GETS ANGRY WITH ME ALOT. A DIFFERENT PERSON BUT THEY ARE THE SAME PEOPLE WE FELL IN LOVE WITH ITS THE DAM CANCER THATS THE PROBLEM.THEY DONT WANT TO BE THAT WAY BUT THEY ARE DYING SO I CAN'T IMAGINE HOW I WOULD BE ACTING IF IT WAS ME . I KNOW HE LOVES ME .LIFE WILL GO IN BUT IT WILL BE DIFFICULT WTIH OUT HIM .HANG IN THERE

    MICHELLE
  • Sunflower
    Sunflower Member Posts: 12
    #8
    angelsbaby said:

    MINE TOO
    MY HUSBAND IS DYING ALSO. LOSING WEIGHT VOMITING IT IS SO SAD FOR ME TO SEE HIM LIKE THIS. I LOVE HIM VERY MUCH BUT I AM LIMITED ON HOW MUCH HELP I CAN GIVE HIM HE ALSO GETS ANGRY WITH ME ALOT. A DIFFERENT PERSON BUT THEY ARE THE SAME PEOPLE WE FELL IN LOVE WITH ITS THE DAM CANCER THATS THE PROBLEM.THEY DONT WANT TO BE THAT WAY BUT THEY ARE DYING SO I CAN'T IMAGINE HOW I WOULD BE ACTING IF IT WAS ME . I KNOW HE LOVES ME .LIFE WILL GO IN BUT IT WILL BE DIFFICULT WTIH OUT HIM .HANG IN THERE

    MICHELLE

    Mine too
    Michelle,

    You hang in there too. I know it's the cancer talking when he gets angry, and I can't even imagine what it's like for him--to be the one who is physically attacked by this horrible beast. Keep us posted on how you and your husband are doing, and thanks for writing me.

    Take care,
    Liz
  • tiredone2009
    tiredone2009 Member Posts: 1
    #9
    Friendship
    Liz:

    I am hoping to chat with others in my same situation so that we can offer each other an ear of understanding. My husband was diagnosed with a rare sarcoma 16 years ago and has been through 7 major abdominal surgeries, radition, two experimental therapies, two major depressions. The cancer has obviously taken its toll on him - he has many physical symptoms and now the tumors are back again and he has decided not to pursue any more treatment - I support him but know I am losing him but have no idea when. I am a nurse and have set up hospice for the time when we need it. I have seen too many people suffering in the hospital and do not want that for the one I love. I have talked to the oncologist and he agreed with me about hospice and said that my husband's course may go downhill fast. On the outside he looks OK but has lost weight and gets tired more often. He still goes to work - I think it gives him purpose - sometimes I get so tired of all of this - I cry at the drop of a hat and am sure it is depression. Just need some people who understand.

    Louise
  • slickwilly
    slickwilly Member Posts: 334 Member
    #10
    tiredone2009 said:

    Friendship
    Liz:

    I am hoping to chat with others in my same situation so that we can offer each other an ear of understanding. My husband was diagnosed with a rare sarcoma 16 years ago and has been through 7 major abdominal surgeries, radition, two experimental therapies, two major depressions. The cancer has obviously taken its toll on him - he has many physical symptoms and now the tumors are back again and he has decided not to pursue any more treatment - I support him but know I am losing him but have no idea when. I am a nurse and have set up hospice for the time when we need it. I have seen too many people suffering in the hospital and do not want that for the one I love. I have talked to the oncologist and he agreed with me about hospice and said that my husband's course may go downhill fast. On the outside he looks OK but has lost weight and gets tired more often. He still goes to work - I think it gives him purpose - sometimes I get so tired of all of this - I cry at the drop of a hat and am sure it is depression. Just need some people who understand.

    Louise

    tiredone2009
    I am so sorry. You will find many people here that have been and are in the same situation. Many of us have been through cancer, lost loved ones to cancer or are helping others through cancer. I guess I fall into all three catagories. Every case is a bit different but there are so many common problems and emotions involved that most people here understand where your at. As a man that kept working as long as I could I can understand what your husband is doing. Many of us felt like we were dragging the family down with us and were a burden emotionally and financially. Working gave us a sense of worth, value and helped us forget some of our peoblems if only for a few seconds. I guess we all make serious choices on being admitted to a hospital, hospice care or passing at home. It may sound stupid but my family has orders to put me in my front yard. I live in the woods and that has been one of the best parts of my life. I don't want to wake up and see a hospital room. Its surprising how many of us have been married for a large number of years. I am at 33 years of marriage now. To think of losing someone that has been with you for so long is impossible to comprehend. So some level of depression is normal. As a caregiver for so long I can't imagine the emotional toll it has taken on you. I do know you are quite special as you didn't run away or give up during all these years your husband was struggling. Many people are not as blessed to have someone like you in their lives. Try to get some needed time for yourself also as your not doing anyone favors if you get yourself sick. Myself and many others will be here to support you. Bless you Slickwilly
  • green50
    green50 Member Posts: 312
    #11
    slickwilly said:

    tiredone2009
    I am so sorry. You will find many people here that have been and are in the same situation. Many of us have been through cancer, lost loved ones to cancer or are helping others through cancer. I guess I fall into all three catagories. Every case is a bit different but there are so many common problems and emotions involved that most people here understand where your at. As a man that kept working as long as I could I can understand what your husband is doing. Many of us felt like we were dragging the family down with us and were a burden emotionally and financially. Working gave us a sense of worth, value and helped us forget some of our peoblems if only for a few seconds. I guess we all make serious choices on being admitted to a hospital, hospice care or passing at home. It may sound stupid but my family has orders to put me in my front yard. I live in the woods and that has been one of the best parts of my life. I don't want to wake up and see a hospital room. Its surprising how many of us have been married for a large number of years. I am at 33 years of marriage now. To think of losing someone that has been with you for so long is impossible to comprehend. So some level of depression is normal. As a caregiver for so long I can't imagine the emotional toll it has taken on you. I do know you are quite special as you didn't run away or give up during all these years your husband was struggling. Many people are not as blessed to have someone like you in their lives. Try to get some needed time for yourself also as your not doing anyone favors if you get yourself sick. Myself and many others will be here to support you. Bless you Slickwilly

    This is the Right Place
    I lost my husband to lung cancer and I myself have ovarian and have been with this for 7 years. My husband was first my caretaker for 2 years then he had his fight with cancer he took his wings in 2005 after one and years of battle. Slickwilly is right we all have had our share. The discussion board and chat room have taught me some things I didn't know even after 7 years. These are some wonderful people and I am sorry we all had to meet under these circumstances but so greatful for the support with even those who are suffering too they still are there for others. I am greatful I was there for my husband even though it was hard. I think all of you are very thoughtful and giving and show you have heart. God bless you.
    Prayers and Hugs
    Sandy
  • wstexgirl
    wstexgirl Member Posts: 7
    #12
    sunflower
    I was wondering if you have heard anything about chemobrain..my dad is mad and cant sit still sleep..he is so miserable I wanted him to go to dr today...but he wont he just got out of hospital yesterday..I know Im jumping around..here But my brain sems aa little scattered I will pray for you Lisa
  • wstexgirl
    wstexgirl Member Posts: 7
    #13
    Sunflower said:

    Mine too
    Michelle,

    You hang in there too. I know it's the cancer talking when he gets angry, and I can't even imagine what it's like for him--to be the one who is physically attacked by this horrible beast. Keep us posted on how you and your husband are doing, and thanks for writing me.

    Take care,
    Liz

    Sunflower my dad to has been
    Sunflower my dad to has been angry and restless and not acting like his self this is very scary...Cancer does suck...and days are so long Im constatly trying to make him happy..But not doing so good I know he loves me Im wondering if my dad will come back
  • Sunflower
    Sunflower Member Posts: 12
    #14
    tiredone2009 said:

    Friendship
    Liz:

    I am hoping to chat with others in my same situation so that we can offer each other an ear of understanding. My husband was diagnosed with a rare sarcoma 16 years ago and has been through 7 major abdominal surgeries, radition, two experimental therapies, two major depressions. The cancer has obviously taken its toll on him - he has many physical symptoms and now the tumors are back again and he has decided not to pursue any more treatment - I support him but know I am losing him but have no idea when. I am a nurse and have set up hospice for the time when we need it. I have seen too many people suffering in the hospital and do not want that for the one I love. I have talked to the oncologist and he agreed with me about hospice and said that my husband's course may go downhill fast. On the outside he looks OK but has lost weight and gets tired more often. He still goes to work - I think it gives him purpose - sometimes I get so tired of all of this - I cry at the drop of a hat and am sure it is depression. Just need some people who understand.

    Louise

    Hi Louise,
    I haven't logged on here since last week, so I apologize for not responding to your post sooner. I'm glad that Slickwilly and Sandy responded to you. I've been having a tough time with all of the lately too and reading their responses gave me comfort as well. This site is full of kind and caring people who know our pain and can help us on this journey.

    The reality of losing our husbands is so scary. Today hospice called to set up an intital visit with us and it really scared me and my husband. It feels like we're giving up or something...In my mind I know that isn't the case, but it feels like the last chapter is staring us in the face.

    Just know that you're not alone--we are all here for one another, and take care of yourself as the others suggested. It's advice that I need to take as well! :)

    Hugs,
    Liz
  • Sunflower
    Sunflower Member Posts: 12
    #15
    wstexgirl said:

    sunflower
    I was wondering if you have heard anything about chemobrain..my dad is mad and cant sit still sleep..he is so miserable I wanted him to go to dr today...but he wont he just got out of hospital yesterday..I know Im jumping around..here But my brain sems aa little scattered I will pray for you Lisa

    Hi Wstexgirl,
    I'm a Texas girl too...I'm originally from San Antonio and have lived in the Fort Worth area for 11 years.

    I found some useful infomation on the cancer society's website on chemobrain that might be helpful to you as well. Copy and paste the link below into your browser.

    http://www.cancer.org/docroot/MBC/content/MBC_2_3x_Chemobrain.asp?sitearea=MBC

    My husband has been off of chemo since mid-December and his chemobrain doesn't seem to be as bad as it was before. It's tough to deal with sometimes. There were times when he would swear that he did or did not say something and he had or had not. Whatever the case was. Or he would say that I didn't tell him something and I would try desperately to remind that I told him about whatever it was, and we'd go round and round. It's such a frustrating thing for all parties concerned. There are lots of other examples...I think it made him feel like he was losing his mind. There are so many things that we cannot control when it comes to cancer and how much it affects our lives.

    I will keep you and your family in prayer for strength, peace, rest, and comfort through all of this.

    Hugs,
    Liz
  • green50
    green50 Member Posts: 312
    #16
    Sunflower said:

    Hi Wstexgirl,
    I'm a Texas girl too...I'm originally from San Antonio and have lived in the Fort Worth area for 11 years.

    I found some useful infomation on the cancer society's website on chemobrain that might be helpful to you as well. Copy and paste the link below into your browser.

    http://www.cancer.org/docroot/MBC/content/MBC_2_3x_Chemobrain.asp?sitearea=MBC

    My husband has been off of chemo since mid-December and his chemobrain doesn't seem to be as bad as it was before. It's tough to deal with sometimes. There were times when he would swear that he did or did not say something and he had or had not. Whatever the case was. Or he would say that I didn't tell him something and I would try desperately to remind that I told him about whatever it was, and we'd go round and round. It's such a frustrating thing for all parties concerned. There are lots of other examples...I think it made him feel like he was losing his mind. There are so many things that we cannot control when it comes to cancer and how much it affects our lives.

    I will keep you and your family in prayer for strength, peace, rest, and comfort through all of this.

    Hugs,
    Liz

    Chemo Or steroids
    Maybe sometimes people cant sleep because of the premeds which alot of times is steroids. Steroids keep me from sleeping. Chemo brain in my part is I forget things and have to stop and think what I am saying but when I get breaks memory is better. I dont think the chemo keeps me awake unless I have pain in legs but steroids look out I am awake the 3 nights after chemo. Everything effects people differently but thats what happens in my case.
    Prayers and Hugs
    Sandy
  • fez1
    fez1 Member Posts: 47
    #17
    green50 said:

    Chemo Or steroids
    Maybe sometimes people cant sleep because of the premeds which alot of times is steroids. Steroids keep me from sleeping. Chemo brain in my part is I forget things and have to stop and think what I am saying but when I get breaks memory is better. I dont think the chemo keeps me awake unless I have pain in legs but steroids look out I am awake the 3 nights after chemo. Everything effects people differently but thats what happens in my case.
    Prayers and Hugs
    Sandy

    Thanks to all of you
    Everyone,
    I am so glad that I opened this site and subject. I feel so much the same way as all fo you, each of you. My husband is 52, Stage IV colon cancer, diagnosed July '05. He's been through it all- all chemos, 2 surgeries, 2 RFA's, stereotactic radiation and now awaiting SirSpheres. I remain hopeful but he's starting to have HAD IT with the whole treatment scene. Someone else expressed it to well when they said that the patient feels like he is dragging the family down. My husband has started to verbalize just that. He's also afraid about our financial situation and feels that he's not doing his part just to pay the bills. I so appreciate learning about the chat room. I'll be on next Tuesday. Thanks to everyone.

    Carol
  • green50
    green50 Member Posts: 312
    #18
    fez1 said:

    Thanks to all of you
    Everyone,
    I am so glad that I opened this site and subject. I feel so much the same way as all fo you, each of you. My husband is 52, Stage IV colon cancer, diagnosed July '05. He's been through it all- all chemos, 2 surgeries, 2 RFA's, stereotactic radiation and now awaiting SirSpheres. I remain hopeful but he's starting to have HAD IT with the whole treatment scene. Someone else expressed it to well when they said that the patient feels like he is dragging the family down. My husband has started to verbalize just that. He's also afraid about our financial situation and feels that he's not doing his part just to pay the bills. I so appreciate learning about the chat room. I'll be on next Tuesday. Thanks to everyone.

    Carol

    Again prayers to your husband and you
    Carol I hope he doesnt give up if he still has options. I am not sure what you meant by SirSpheres but something could be the break thru. We all keep going and praying we are around for the cure or at least something to control without side effects. I will be praying and chat does help. God bless
    Prayers and Hugs as always
    Sandy

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