Looking for caregivers that are taking care of their spouses

infoneeded
infoneeded Member Posts: 23
edited March 2014 in Caregivers #1
I am 40 and my husband is 42. He was diagnosed in May 09 with gbm IV. He just had his second craniotomy. I am trying to figure out how to deal with the emotions of taking care of my husband,kids, house and finances. At the end of the day I just want to be held. The loneliness is starting to become unbearable. How do you deal with the loneliness?
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Comments

  • marywest
    marywest Member Posts: 132
    dealing with loneliness
    You are carrying a huge load on your shoulders. I want to help you so bad and i dont' know to start. By any chance has the hospital offered any kind of a support group for you? I know that God hears our prayers and not only does he hear them he answers them. You need to be loved throughout this. How old are your kids? Would you love to read some good books that could really bless your life? I would send you some. but in the mean time the next time you go to the hospital start asking where can a spouse get help coping with all of the responsibilities that have been layed at your feet. I will give you my email if there is anything I can send you i would be more than happy, live up in Alaska and at best I can write you or do what ever I can. I will pray and lets beleive together right now that your heart gets healed and loneliness turns into comfort. marywest8888@yahoo.com Your not alone.
  • marywest said:

    dealing with loneliness
    You are carrying a huge load on your shoulders. I want to help you so bad and i dont' know to start. By any chance has the hospital offered any kind of a support group for you? I know that God hears our prayers and not only does he hear them he answers them. You need to be loved throughout this. How old are your kids? Would you love to read some good books that could really bless your life? I would send you some. but in the mean time the next time you go to the hospital start asking where can a spouse get help coping with all of the responsibilities that have been layed at your feet. I will give you my email if there is anything I can send you i would be more than happy, live up in Alaska and at best I can write you or do what ever I can. I will pray and lets beleive together right now that your heart gets healed and loneliness turns into comfort. marywest8888@yahoo.com Your not alone.

    This comment has been removed by the Moderator
  • melissaincali
    melissaincali Member Posts: 34
    I Understand
    I am 34 and currently sitting in the hospital with my husband in NYC (we live in California) on Thankgiving day as he recovers from a less than positive surgery. He is stage IV colorectal cancer and they found more widespread cancer during what we thought would be a very useful surgery. I understand how difficult it is. We have a 3 year old son and dealing with everything is emotionally draining at the moment. We have a ton of support through amazing friends and family, but there is still loneliness. There is no one who truly understands what I am going through and sometimes it is hard to relate to our friends whose lives are progressing at a nice clip (weddings, new babies, vacations). All the stuff I thought we would be doing at the moment.

    Not sure if I have any encouraging words or answers for you, but I wanted you to know I feel your pain and understand where you are coming from. It is nice (but not nice at the same time) to find another caregiver in a similar circumstance. Perhaps we can support each other.
    Melissa
  • lisaonthenet
    lisaonthenet Member Posts: 69
    Hello,
    My partner of 9+ years has metastatic thyroid cancer and over the past year and a half it's gotten worse. We don't have any children but it's still tough. We both maintain full-time jobs and she's an inspiration to me. She's getting chemo treatments, radiation for mets, and also working full-time. It can get lonely. I find that talking with friends and family, writing, drawing, and spending quality time with her help.

    Lisa
  • sallen2001
    sallen2001 Member Posts: 3
    One Day At A Time
    That is how we are living our lives. My husband of 38+ years learned in June he has esphogeal cancer stage IV, terminal, pallative care only. At first given 3-6 months, found another doctor for second opinion (total God thing in how this happen)and in September was told after the radition and continued chemo, 2-12 months lean more toward the 2 months. We have passed that now (the 2 months), and I am grateful for everyday we still have as long as he is not in pain.

    People will ask me how am I doing, and what is one to say to that? I work on taking everything just for today, one day at a time. A few have said they admire my courage, and I think this is not courage, but faith in God and his gift of helping me live for just today and coping with what is right in front of me. But many times the fear starts to crept in, doing a long term death watch is not easy.

    For several years in my life I have worked on my graditudes, kept staying in them, everyday always tried to find things to be thankful for. Many times thought I needed to work on other character defects, but kept going back to graditudes. Now I know why, because without finding something to be gratful for today, I could not make it.

    I am dealing with today, I can think about after, I will not let myself think or talk about the "when it happens".
    I hope this is not too much off topic, but just wanted to share. I do understand the "talking talking talking"

    sallen
  • dma2z
    dma2z Member Posts: 1
    you are not alone in your loneliness
    My husband and I are 38 years old. Two kids, 7 and 4. He was diagnosed with stage 3b, inoperable lung cancer in July of this year. He's been hospitalized due to reactions of chemo and is now basically on a maintenance chemo. We are currently weighing the quality vs quantity of life issue. I have to work full time for our health benefits and to pay the bills and try to keep the kids lives normal as possible: dance class, cubscouts, playdates, etc. My day is so full taking care of other people's needs that by the time I lay into bed I'm exhausted. People are there to help and I'm grateful for their help, but the one thing I crave more than anything is to be held. My husband has neurapathy so bad that he can't be held or hold anyone. The loneliness is just so unbearable at times. I don't have a solution for it, but believe me I can understand what you are going though and sometimes it's enough to know that you are not alone in how you feel. Hang in there, that's all we can do....
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    Loneliness
    I, too, understand the loneliness. My husband passed away from stage 4 colon cancer Oct. 20, 2009, but the loneliness started way before that. He fought the cancer for 6 years and was in treatment for much of that time. We were really blessed with the six years and made many wonderful memories. Yet, a great deal of time was spent in hospitals, chemo lab, and dr. offices For over a year at the end he slept in his recliner because of pain in his back. I don't have any words of wisdom. I can only tell you that I think your feelings are shared by many of us. Fay
  • sue Siwek
    sue Siwek Member Posts: 279
    i have been a caregiver for
    i have been a caregiver for 10 yrs. now. husband had an anaplastic astrocytoma grade 3. is cancer free at this time. he was graced with another problem, parkinson's. some days are very lonely as his memory and verbal skills are not very good. early on he had speech therapy and physical therapy and that seem to help but the parkinson's has taken over. know the feeling about being held. i am much older than you and the physicalness is something i can deal with more easily. all i can say is find affection with your children, family and friends. it is not the same but will help you through this time. hopefully, once he is through the recovery he will be strong enough to give you that physicalness that you both need. don't give up, you will be so proud of the person that you are becoming. you will adjust as time goes by to all the added responsibilities and in fact feel a certain empowerment from it. i now make all the decisions regarding any investments etc. and those are the things that early on i wanted to do but he wanted control of. now i control everything! even getting the trash out! find the courage and laugh when you can. my hope for you is that at such a young age you and your husband can find some semblance of a normal life someday in the future. in the mean time rely heavily on those that are willing to help. and, please assert yourself, ask for help that is the only sure way of getting it. my heart is with you.
  • newbride
    newbride Member Posts: 142
    marywest said:

    dealing with loneliness
    You are carrying a huge load on your shoulders. I want to help you so bad and i dont' know to start. By any chance has the hospital offered any kind of a support group for you? I know that God hears our prayers and not only does he hear them he answers them. You need to be loved throughout this. How old are your kids? Would you love to read some good books that could really bless your life? I would send you some. but in the mean time the next time you go to the hospital start asking where can a spouse get help coping with all of the responsibilities that have been layed at your feet. I will give you my email if there is anything I can send you i would be more than happy, live up in Alaska and at best I can write you or do what ever I can. I will pray and lets beleive together right now that your heart gets healed and loneliness turns into comfort. marywest8888@yahoo.com Your not alone.

    I'm here too
    I ca certainly relate to the loneliness. My husband and I are both 42. We have been together just 3 1/2 years now. We just got married this past May and I will be losing him before our first wedding anniversary. Like someone said earlier it's hard dealing with friends and families getting through their lives (weddings, etc) when I feel like mine is being ripped apart. I am the only caregiver and it's certainly overwhelming at times - trying to juggle the questions of his family (every day -- how is he? UGH - the same!) and issues with his ex wife wanting all details so she can "prepare" his kids (17 and 16). It's really alot. Luckily hospice has been wonderful giving me the support I need - we have an aid here during the day from 8-4 so I can work and not worry about how he is doing at home alone.
  • donnare
    donnare Member Posts: 266
    I'm here too
    My husband is stage IV colon cancer with over 11 inoperable mets to his liver at this point. We are currently sitting in the infusion room for treatment number 10 (FOLFOX). It is very difficult - this caregiver role. I've only been at it since May 09. We are both 52.

    I don't have much to offer - we are taking it day by day. Have you thought about talking to a professional, or can you reach out to family or friends? I am very lucky - my family and friends have been wonderfully supportive, as well as my co-workers, and my daughters - 21 and 19 - are terrific, a blessing to me and their father.

    Even with all of this though, my emotions get away from me sometimes. I went to a counselor, will go again if I need to, and also take an anti-depressant that has taken the edge off.

    You are very young, as is your husband. I'm so sorry for all you are going through. I will keep you in my prayers, and send good thoughts your way. If I can be of any support, please post or PM me. I read more than I post - mostly on the colorectal site to gather info - but I know somewhat what you are feeling.

    Take care of yourself,
    Donna
  • infoneeded
    infoneeded Member Posts: 23
    donnare said:

    I'm here too
    My husband is stage IV colon cancer with over 11 inoperable mets to his liver at this point. We are currently sitting in the infusion room for treatment number 10 (FOLFOX). It is very difficult - this caregiver role. I've only been at it since May 09. We are both 52.

    I don't have much to offer - we are taking it day by day. Have you thought about talking to a professional, or can you reach out to family or friends? I am very lucky - my family and friends have been wonderfully supportive, as well as my co-workers, and my daughters - 21 and 19 - are terrific, a blessing to me and their father.

    Even with all of this though, my emotions get away from me sometimes. I went to a counselor, will go again if I need to, and also take an anti-depressant that has taken the edge off.

    You are very young, as is your husband. I'm so sorry for all you are going through. I will keep you in my prayers, and send good thoughts your way. If I can be of any support, please post or PM me. I read more than I post - mostly on the colorectal site to gather info - but I know somewhat what you are feeling.

    Take care of yourself,
    Donna

    Thank you for sharing all of
    Thank you for sharing all of your stories. I do have a great support system. I have a friend who has made herself available 24/7. I don't know what I would do without her. The doctors and nurses are our new friends. The biggest challenge I have is the one person that knows me best and the one I have shared everything with is no longer there. It was stated earlier... he and I are the only ones that know exactly what we are dealing with. Even though everyone around me tries to understand nobody can truly know what we are going through and nobody can hold me and make me feel safe and secure like him. I know there is a reason this is happening. I just don't know what that reason is. It has all happened so fast. He was given 6 months to a year. It has now been 7 months. He told me today he would rather die then have another surgery. Surgery is the only way to keep him with us. I have three days to research new treatments and decide which treatment he should be on. Because of the type of cancer he has all treatments are trial and error. His dr is wonderful in helping me but the ultimate decision is always ours to make. It truly sucks because we never know if it will work or not. Again, thank you for sharing.

    God Bless All Caregivers.
  • sue Siwek
    sue Siwek Member Posts: 279

    Thank you for sharing all of
    Thank you for sharing all of your stories. I do have a great support system. I have a friend who has made herself available 24/7. I don't know what I would do without her. The doctors and nurses are our new friends. The biggest challenge I have is the one person that knows me best and the one I have shared everything with is no longer there. It was stated earlier... he and I are the only ones that know exactly what we are dealing with. Even though everyone around me tries to understand nobody can truly know what we are going through and nobody can hold me and make me feel safe and secure like him. I know there is a reason this is happening. I just don't know what that reason is. It has all happened so fast. He was given 6 months to a year. It has now been 7 months. He told me today he would rather die then have another surgery. Surgery is the only way to keep him with us. I have three days to research new treatments and decide which treatment he should be on. Because of the type of cancer he has all treatments are trial and error. His dr is wonderful in helping me but the ultimate decision is always ours to make. It truly sucks because we never know if it will work or not. Again, thank you for sharing.

    God Bless All Caregivers.

    it has been 10 years since
    it has been 10 years since my husband went through all the chemo and radiation, but to this day he will say that he will not go through that again. there is no easy answer. maybe he will change his mind considering his age. will be thinking of you through this time, keep posting. so glad you have such a strong support group.
  • Len_J
    Len_J Member Posts: 1

    Thank you for sharing all of
    Thank you for sharing all of your stories. I do have a great support system. I have a friend who has made herself available 24/7. I don't know what I would do without her. The doctors and nurses are our new friends. The biggest challenge I have is the one person that knows me best and the one I have shared everything with is no longer there. It was stated earlier... he and I are the only ones that know exactly what we are dealing with. Even though everyone around me tries to understand nobody can truly know what we are going through and nobody can hold me and make me feel safe and secure like him. I know there is a reason this is happening. I just don't know what that reason is. It has all happened so fast. He was given 6 months to a year. It has now been 7 months. He told me today he would rather die then have another surgery. Surgery is the only way to keep him with us. I have three days to research new treatments and decide which treatment he should be on. Because of the type of cancer he has all treatments are trial and error. His dr is wonderful in helping me but the ultimate decision is always ours to make. It truly sucks because we never know if it will work or not. Again, thank you for sharing.

    God Bless All Caregivers.

    My thoughts are with you.
    My

    My thoughts are with you.

    My wife was recently dignosed with Breast Cancer.......as a guy, I want to fix it, but can't.....so the only thing I can do is be there for her and be positive and strong for her.......but she is my other half....and sometimes being honest about my fears would not be good for her. The result is isolation.

    Herre is what I found has worked for me to ease this:

    1.) I process out loud, so having someone, who has been there, or is there to talk to really eases the lonliness. I found a goup of guys going thru the same thing in my home town thru the breast cancer surgeons office that has been great. It helps me realize that what I'm feeling is not unique & helps me prepare for the future. It also helps me get centered for my wife.

    2.) I've begun to talk out loud with other familiy & friends about what I'm feeling. I'm finding that some really get it & realize they can't fix me, but are there to support me....that eases the lonliness. I tend to isolate when I get down, and activly working to not isolate & "Bear it alone" helps...alot.

    Be kind to yourself.......while you are not the sick one, you are a victim of this in ways different from your husband. It's OK to reach out & help yourself.

    Thoughts & prayers.

    Len
  • mysarial
    mysarial Member Posts: 14
    Len_J said:

    My thoughts are with you.
    My

    My thoughts are with you.

    My wife was recently dignosed with Breast Cancer.......as a guy, I want to fix it, but can't.....so the only thing I can do is be there for her and be positive and strong for her.......but she is my other half....and sometimes being honest about my fears would not be good for her. The result is isolation.

    Herre is what I found has worked for me to ease this:

    1.) I process out loud, so having someone, who has been there, or is there to talk to really eases the lonliness. I found a goup of guys going thru the same thing in my home town thru the breast cancer surgeons office that has been great. It helps me realize that what I'm feeling is not unique & helps me prepare for the future. It also helps me get centered for my wife.

    2.) I've begun to talk out loud with other familiy & friends about what I'm feeling. I'm finding that some really get it & realize they can't fix me, but are there to support me....that eases the lonliness. I tend to isolate when I get down, and activly working to not isolate & "Bear it alone" helps...alot.

    Be kind to yourself.......while you are not the sick one, you are a victim of this in ways different from your husband. It's OK to reach out & help yourself.

    Thoughts & prayers.

    Len

    My husband also has a recent diagnosis...
    I'm 34, he will be 36 on Dec 30th. We've been married 13 years Next May. His diagnosis is Mesothelioma, and as if cancer wasn't hard enough, we can't figure out where he could have been exposed to asbestos. It's so totally random and rare. I can totally empathize with everything you are going through. Everything has fallen on me, and even though he wants to help, he can't.

    As much as I want to be hopeful that he will beat this, the odds are not in his favour, so it's really hard to see most everyone we thought was close to us, avoiding us like the plague. I've never felt more isolated. I often feel like our friends have abandoned us. I haven't heard from many of them in weeks, and the ones I do hear from are very sporadic.

    I'm on anti-depressants. No, I'm not medicated out of my head, but I still have to go to work, and then handle everything at home, and they keep me from losing it 15 times a day, so I appreciate the help they give. I've been looking for some kind of a support group for Meso locally, but the disease is so rare, there's nothing very close.

    My thought and prayers are with you, I desperately hope you can find what you're looking for. Caregivers have entirely too much on their plate to have to go through it alone.
  • MelanieT
    MelanieT Member Posts: 186

    I Understand
    I am 34 and currently sitting in the hospital with my husband in NYC (we live in California) on Thankgiving day as he recovers from a less than positive surgery. He is stage IV colorectal cancer and they found more widespread cancer during what we thought would be a very useful surgery. I understand how difficult it is. We have a 3 year old son and dealing with everything is emotionally draining at the moment. We have a ton of support through amazing friends and family, but there is still loneliness. There is no one who truly understands what I am going through and sometimes it is hard to relate to our friends whose lives are progressing at a nice clip (weddings, new babies, vacations). All the stuff I thought we would be doing at the moment.

    Not sure if I have any encouraging words or answers for you, but I wanted you to know I feel your pain and understand where you are coming from. It is nice (but not nice at the same time) to find another caregiver in a similar circumstance. Perhaps we can support each other.
    Melissa

    I also am 34 and my husband
    I also am 34 and my husband is battling colon cancer. Was stage 3c til last week when they found a mass in his lungs and liver. It has been so overwhelmingly hard to watch everyone elses life not skip a beat. Our friends said the other day we are planning a big friend vacation for the summer you two have to go.. I just looked at them puzzled, then went home and cried. It is very lonly and painful not only to have to watch the person you love go through this but have to go through it ourselves. Im here if you ever need me, maybe we can get through this together. Stay strong and my prayers are with you.

    Melanie
  • FlDino
    FlDino Member Posts: 11
    I have been taking care of
    I have been taking care of my wife (with Gallbladder cancer) for a cuple months now. She's come along OK but she refuses to eat very much. She's way too thin now and the nurse says she has to eat more for the proteins to help with healing the incision. One tries not to get frustrated or even mad but it's hard when you know she used to eat very well, now can barely get spoons of cereal in. Can get her to drink 2 boost type drinks in her but that isn't even 1000 calories.

    I've comwe to terms with the cancer taking her but have not much patience I guess for her starving herself to death. Anyone have any tricks I can use to get her to eat more?
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    FlDino said:

    I have been taking care of
    I have been taking care of my wife (with Gallbladder cancer) for a cuple months now. She's come along OK but she refuses to eat very much. She's way too thin now and the nurse says she has to eat more for the proteins to help with healing the incision. One tries not to get frustrated or even mad but it's hard when you know she used to eat very well, now can barely get spoons of cereal in. Can get her to drink 2 boost type drinks in her but that isn't even 1000 calories.

    I've comwe to terms with the cancer taking her but have not much patience I guess for her starving herself to death. Anyone have any tricks I can use to get her to eat more?

    Try Boost Milkshakes
    When my husband was having trouble eating, I made him milkshakes with the boost type drinks. That was suggested by a nurse, and it worked well. I hope it works for you, too. Fay
  • Just-tired
    Just-tired Member Posts: 3
    Caregiver for Spouse
    I certainly can identify with you, we all can. I'm sorry for what you and your husband are going through. My husband has prostate cancer, inoperable tumor and it has metatasized to his bones. He broke his femur, had surgery, went for rehab and is now home.It is exhausting. He walks with a walker and suddenly has developed terrible tremors. He is 72 and I am 64. He was diagnosed in 08 and it's been hell ever since.

    I know what you mean about the lonliness and wanting to be held. I wish I could crawl into someone's arms just for a hug. You are both so young and my heart breaks for you both. However, this site is very helpful, there are chat rooms where people really listen.

    Maybe you could hug your husband, I'm sure he needs it as much as you do, hug your kids, I'm sure they're just as emotionally drained and frightened as you are. Call your friends, family and if that's not possible just hang out here. I wish all the best to you and your family.
  • Just-tired
    Just-tired Member Posts: 3
    mysarial said:

    My husband also has a recent diagnosis...
    I'm 34, he will be 36 on Dec 30th. We've been married 13 years Next May. His diagnosis is Mesothelioma, and as if cancer wasn't hard enough, we can't figure out where he could have been exposed to asbestos. It's so totally random and rare. I can totally empathize with everything you are going through. Everything has fallen on me, and even though he wants to help, he can't.

    As much as I want to be hopeful that he will beat this, the odds are not in his favour, so it's really hard to see most everyone we thought was close to us, avoiding us like the plague. I've never felt more isolated. I often feel like our friends have abandoned us. I haven't heard from many of them in weeks, and the ones I do hear from are very sporadic.

    I'm on anti-depressants. No, I'm not medicated out of my head, but I still have to go to work, and then handle everything at home, and they keep me from losing it 15 times a day, so I appreciate the help they give. I've been looking for some kind of a support group for Meso locally, but the disease is so rare, there's nothing very close.

    My thought and prayers are with you, I desperately hope you can find what you're looking for. Caregivers have entirely too much on their plate to have to go through it alone.

    Mesothelioma
    Are you English, here in the US. I ask because of the way you spelled favor. In any event I want to tell you, if you are in the states, to contact an attorney. His illness is not rare at all. You would be amazed how many people have it. I have worked in the legal field for over 25 years and you can sue the place, thing that caused his illness. A lawyer will know the right thing to do and ask the right questions such as every place he has ever worked, type of work, where he's lived etc.

    I know what you mean about friends, it's like if they talk to you they'll catch something. My feeling is that these people weren't really friends. Keep taking your antidepressants. I'm glad they help you, I take them too. Anything to help us cope with the person we love suffering.

    God Bless you both and keep the faith.
  • Barbara53
    Barbara53 Member Posts: 652
    FlDino said:

    I have been taking care of
    I have been taking care of my wife (with Gallbladder cancer) for a cuple months now. She's come along OK but she refuses to eat very much. She's way too thin now and the nurse says she has to eat more for the proteins to help with healing the incision. One tries not to get frustrated or even mad but it's hard when you know she used to eat very well, now can barely get spoons of cereal in. Can get her to drink 2 boost type drinks in her but that isn't even 1000 calories.

    I've comwe to terms with the cancer taking her but have not much patience I guess for her starving herself to death. Anyone have any tricks I can use to get her to eat more?

    lots of soft snacks
    My mother has no appetite from advanced ovarian cancer, and she can't comfortably eat but small amounts at a time. Mashed potatoes go over well, and other soft, warm foods like oatmeal seem welcome, too. Last week one day I made her the ultimate sick kid food, milk toast: buttered toast swimming in warm milk with sugar on top. She cleaned her bowl.
    Ensure milk chocolate flavor is really tasty, good source of protein, but I think the warm food have a double benefit on cold winter days.