How can I manage everything?

lfalls75
lfalls75 Member Posts: 4
in Caregivers #1
My husband was diagnosed with Renal Cell Carcinoma Subtype translocation xp 11.2 in August of 2010. He had a right nephrectomy and lymphnode dissection. It had metastisized to his bones as well. This is February and we were just told that the Sutent is not working. His bone lesions are growing and there are many more of them. I am completely overwhelmed...I have my husband at home who is in severe pain from the bone mets, I have two young children, girls 8 and 11. My 11 year old has Type I Diabetes. I start nursing school in August, which I have no idea how I can manage all of this and be successful in my nursing program. At this point I know that I have no other choice but to do my nursing school since I currently am only a CNA and I have to be realistic about the future. My husband is 37 years old and had never been sick in our 16 years of marriage. We thought when our daughter was diagnosed four years ago with Diabetes that that was the worse thing that could happen. Boy were we wrong! I worry so much about my 8 year old because she sees that I care for my husband daily and my oldest daughters needs as well. I am so afraid that she is going to think that because she is not sick she isn't important. All of my family is in another state and my husbands as well. His are only 1 1/2 away though but they are not a lot of help. How do I cope with my husbands illness and make sure that i am here every minute for him and keep everything else in my life going at the same time? How can I wear all of these hats and be good at all of them? There is nothing I want more than to help my husband and make sure that he is comfortable, but I also have to make sure that my kids are not pushed to the back burner.

Comments

  • wrs8574
    wrs8574 Member Posts: 3
    #2
    First of all, I'm sorry to
    First of all, I'm sorry to hear about your Husband's battle with this disease. I'd like to share a few things with you. I am your husband's age and my Fiance Jenn is 32 and we do not have kids (Other than furry one's).

    In October 2009 my Fiance' Jenn was diagnosed with Ewing's Sarcoma/PNET soft tissue cancer within her retroperitoneal cavity. The tumor's initial size was 22X17X14.5cm in diameter. It was absolutely astonishing as to how quickly these types of cancers can spread like wildfire. After being given a pretty grim prognosis from her two initial pile of garabge doctors we differed care from Kaiser Morse Ave in Sacramento to the brand new Kaiser Roseville Medical Center. Night & day differences between the two institutions. After enduring 7 rounds of P6 Protocol chemo, debulking surgery & 32 days of radiation therapies we are now waiting for her first PET Scan since finishing everything to see if the cancer has been arrested. Jenn's story, much like most other survivor's stories could go on and on and on if I allowed myself to write that long, but this about something different......it's about "US".

    Being a caregiver is probably one of the hardest things you will ever do in your lifetime. You want to be able to "Help" and "Heal" your loved one, but you really can't. What you CAN do is just be there with him, alongside him, assure him, lead him towards faith if he desires to seek it out and most importantly, treasure every moment you have regardless of the disease. I always tell Jenn when she starts getting down on things......"Are you Cancer's ****, or is it your ****? It doesn't own you, you own it!" What's really hard is when you've been an "Alpha Male" all of your life and you begin to realize that you do not have "Positive Control" over this disease per se. In my former career's (Military/US Army Ranger/SF & Civilian Emergency Servies worker) you are the lifeline that people depend to keep them alive in bad situations. What cancer does is create a "Pocket" that renders all of your training, experience and knowledge out the window. We're ALL on an even playing field. Nobody has the ability to "Cure" cancer per se all by themselves. The most important thing you can do for yourself is, take care of yourself FIRST! I know that sounds selfish but the truth of the matter is, if you don't put yourself first....you won't be able to care for your husband when he needs you to be there for him and your children. I know it sounds selfish but think of it this way, if you don't put yourself first....you can't be there for anybody else (Rule of police officers/firefighters/EMS workers everywhere).

    I'm sorry for rambling on but if you have any questions or simply need to vent, message me here and I will try my hardest to help. Remember, YOU ARE NOT ALONE in this fight. There are others, many, many others out there that have beaten this disease with their loved ones or are beating it now as we speak!
  • DrMary
    DrMary Member Posts: 531 Member
    #3
    wrs8574 said:

    First of all, I'm sorry to
    First of all, I'm sorry to hear about your Husband's battle with this disease. I'd like to share a few things with you. I am your husband's age and my Fiance Jenn is 32 and we do not have kids (Other than furry one's).

    In October 2009 my Fiance' Jenn was diagnosed with Ewing's Sarcoma/PNET soft tissue cancer within her retroperitoneal cavity. The tumor's initial size was 22X17X14.5cm in diameter. It was absolutely astonishing as to how quickly these types of cancers can spread like wildfire. After being given a pretty grim prognosis from her two initial pile of garabge doctors we differed care from Kaiser Morse Ave in Sacramento to the brand new Kaiser Roseville Medical Center. Night & day differences between the two institutions. After enduring 7 rounds of P6 Protocol chemo, debulking surgery & 32 days of radiation therapies we are now waiting for her first PET Scan since finishing everything to see if the cancer has been arrested. Jenn's story, much like most other survivor's stories could go on and on and on if I allowed myself to write that long, but this about something different......it's about "US".

    Being a caregiver is probably one of the hardest things you will ever do in your lifetime. You want to be able to "Help" and "Heal" your loved one, but you really can't. What you CAN do is just be there with him, alongside him, assure him, lead him towards faith if he desires to seek it out and most importantly, treasure every moment you have regardless of the disease. I always tell Jenn when she starts getting down on things......"Are you Cancer's ****, or is it your ****? It doesn't own you, you own it!" What's really hard is when you've been an "Alpha Male" all of your life and you begin to realize that you do not have "Positive Control" over this disease per se. In my former career's (Military/US Army Ranger/SF & Civilian Emergency Servies worker) you are the lifeline that people depend to keep them alive in bad situations. What cancer does is create a "Pocket" that renders all of your training, experience and knowledge out the window. We're ALL on an even playing field. Nobody has the ability to "Cure" cancer per se all by themselves. The most important thing you can do for yourself is, take care of yourself FIRST! I know that sounds selfish but the truth of the matter is, if you don't put yourself first....you won't be able to care for your husband when he needs you to be there for him and your children. I know it sounds selfish but think of it this way, if you don't put yourself first....you can't be there for anybody else (Rule of police officers/firefighters/EMS workers everywhere).

    I'm sorry for rambling on but if you have any questions or simply need to vent, message me here and I will try my hardest to help. Remember, YOU ARE NOT ALONE in this fight. There are others, many, many others out there that have beaten this disease with their loved ones or are beating it now as we speak!

    You can't
    do it all, so you have to pick your battles. I also worried about my kids getting pushed to the back burner, and I did have to depend on them to help with my husband's care - not only could I only take about half of his treatment time off from work (I was lucky to have even that much leave) but I also had to spend several hours per day on his meds, his records, communicating with the doctors, getting him to appointments, buying/making food he could eat, etc. My son got very good at knowing when to fetch a basin - I swear he had a 6th sense for it.

    The kids and I had several small meetings a week in which we checked in on how we all were doing, and I made sure they understood that everything they did helped - they each took on more responsibility (including being more responsible for their own things) and also helped me choose some things we could let go of (school was not an option, but we did all agree that yardwork could take a 6 month vacation, for example).

    Lastly, when all those helpful people offered to help, I asked them to do something for the kids - take them to a movie, shopping, whatever. (They all thought they could help take care of my husband for me, and "give me a break" - giving my kids a break for me was much more useful.)

    We used to hug a lot before my husband was diagnosed, but I think we've probably tripled the hugs/day amount - it helps.
  • lfalls75
    lfalls75 Member Posts: 4
    #4
    DrMary said:

    You can't
    do it all, so you have to pick your battles. I also worried about my kids getting pushed to the back burner, and I did have to depend on them to help with my husband's care - not only could I only take about half of his treatment time off from work (I was lucky to have even that much leave) but I also had to spend several hours per day on his meds, his records, communicating with the doctors, getting him to appointments, buying/making food he could eat, etc. My son got very good at knowing when to fetch a basin - I swear he had a 6th sense for it.

    The kids and I had several small meetings a week in which we checked in on how we all were doing, and I made sure they understood that everything they did helped - they each took on more responsibility (including being more responsible for their own things) and also helped me choose some things we could let go of (school was not an option, but we did all agree that yardwork could take a 6 month vacation, for example).

    Lastly, when all those helpful people offered to help, I asked them to do something for the kids - take them to a movie, shopping, whatever. (They all thought they could help take care of my husband for me, and "give me a break" - giving my kids a break for me was much more useful.)

    We used to hug a lot before my husband was diagnosed, but I think we've probably tripled the hugs/day amount - it helps.

    Dr. Mary,
    I sat here last
    Dr. Mary,

    I sat here last night and typed a whole page and then my computer froze up and it didn't post my message. How frustrating!

    Anyway, to sum it up my husband and I used to hug a lot. We used to play around and laugh and wrestle and just act goofy together. I miss those days tremendously! Nowadays we don't do much of that. We rarely hug because he usually hurts too bad. I am lucky to get a peck on the cheek half of the time. I think I am already grieving the man I used to know and it is really hard to stay positive when you see such a drastic change in such a short time. I feel more like his caregiver than his wife or even his lover. I hate to look at it that way but how else can you look at it? Right now he is in the hospital because he had to have surgery to remove a mass that was pressing on his nerves in his sacrum and causing numbness in his lower limbs. I go to visit and he just sleeps. I understand that he is tired and drugged, but how do I get him motivated to even stay awake long enough to have a 5 minute conversation? I just hope he hasn't already given up! I wonder sometimes if he is just tired or if it is depression and a feeling of defeat. All I know is that I have to put a fire under his butt to get him out of that hospital and get him home with his family, his wife and kids who love him tremendously! Thanks so much for listening to me vent! It does make me feel better to get it out!
  • lfalls75
    lfalls75 Member Posts: 4
    #5
    wrs8574 said:

    First of all, I'm sorry to
    First of all, I'm sorry to hear about your Husband's battle with this disease. I'd like to share a few things with you. I am your husband's age and my Fiance Jenn is 32 and we do not have kids (Other than furry one's).

    In October 2009 my Fiance' Jenn was diagnosed with Ewing's Sarcoma/PNET soft tissue cancer within her retroperitoneal cavity. The tumor's initial size was 22X17X14.5cm in diameter. It was absolutely astonishing as to how quickly these types of cancers can spread like wildfire. After being given a pretty grim prognosis from her two initial pile of garabge doctors we differed care from Kaiser Morse Ave in Sacramento to the brand new Kaiser Roseville Medical Center. Night & day differences between the two institutions. After enduring 7 rounds of P6 Protocol chemo, debulking surgery & 32 days of radiation therapies we are now waiting for her first PET Scan since finishing everything to see if the cancer has been arrested. Jenn's story, much like most other survivor's stories could go on and on and on if I allowed myself to write that long, but this about something different......it's about "US".

    Being a caregiver is probably one of the hardest things you will ever do in your lifetime. You want to be able to "Help" and "Heal" your loved one, but you really can't. What you CAN do is just be there with him, alongside him, assure him, lead him towards faith if he desires to seek it out and most importantly, treasure every moment you have regardless of the disease. I always tell Jenn when she starts getting down on things......"Are you Cancer's ****, or is it your ****? It doesn't own you, you own it!" What's really hard is when you've been an "Alpha Male" all of your life and you begin to realize that you do not have "Positive Control" over this disease per se. In my former career's (Military/US Army Ranger/SF & Civilian Emergency Servies worker) you are the lifeline that people depend to keep them alive in bad situations. What cancer does is create a "Pocket" that renders all of your training, experience and knowledge out the window. We're ALL on an even playing field. Nobody has the ability to "Cure" cancer per se all by themselves. The most important thing you can do for yourself is, take care of yourself FIRST! I know that sounds selfish but the truth of the matter is, if you don't put yourself first....you won't be able to care for your husband when he needs you to be there for him and your children. I know it sounds selfish but think of it this way, if you don't put yourself first....you can't be there for anybody else (Rule of police officers/firefighters/EMS workers everywhere).

    I'm sorry for rambling on but if you have any questions or simply need to vent, message me here and I will try my hardest to help. Remember, YOU ARE NOT ALONE in this fight. There are others, many, many others out there that have beaten this disease with their loved ones or are beating it now as we speak!

    I just wanted to say thanks - wrs8574
    I just wanted to say thanks for reading my post. It is nice to be able to vent to somebody who understands what it is like to live with someone who is fighting cancer. It is undoubtedly going to be the hardest thing that I ever do.

    I understand trying to take care of "yourself" but it is really hard for me to take "me" time! I feel like I have to be there every minute of every day to do whatever it is that he needs me to do. I have pushed myself so hard to be there for everybody and I know that I need to take time for me. I think that is what I am doing now actually. If I can destress by getting my feelings out then I think that will be the biggest help in maintaining my sanity!

    I truly hope that your Fiance' beats this horrible disease and that you all can have many wonderful years together. I pray for everbody who has to fight this terrible fight with Cancer! Good Luck!
  • DrMary
    DrMary Member Posts: 531 Member
    #6
    lfalls75 said:

    Dr. Mary,
    I sat here last
    Dr. Mary,

    I sat here last night and typed a whole page and then my computer froze up and it didn't post my message. How frustrating!

    Anyway, to sum it up my husband and I used to hug a lot. We used to play around and laugh and wrestle and just act goofy together. I miss those days tremendously! Nowadays we don't do much of that. We rarely hug because he usually hurts too bad. I am lucky to get a peck on the cheek half of the time. I think I am already grieving the man I used to know and it is really hard to stay positive when you see such a drastic change in such a short time. I feel more like his caregiver than his wife or even his lover. I hate to look at it that way but how else can you look at it? Right now he is in the hospital because he had to have surgery to remove a mass that was pressing on his nerves in his sacrum and causing numbness in his lower limbs. I go to visit and he just sleeps. I understand that he is tired and drugged, but how do I get him motivated to even stay awake long enough to have a 5 minute conversation? I just hope he hasn't already given up! I wonder sometimes if he is just tired or if it is depression and a feeling of defeat. All I know is that I have to put a fire under his butt to get him out of that hospital and get him home with his family, his wife and kids who love him tremendously! Thanks so much for listening to me vent! It does make me feel better to get it out!

    hugs for kids
    actually, I meant I upped the number of times I hugged the kids. Indeed, at some points, I could only hold hands with my husband, and that had to do.

    I tried to hug the kids extra to let them know they were doing a great job and we appreciated it. I also tried to hug them extra to make up for the hugs they couldn't get from their father (when he was at the hospital or just too sick).

    There were a few times when he did seem to give up or stop trying. That was frustrating. I had to back off and say that it was OK to stop trying to go forwards for a little while (even though it was actually backsliding) and I hated doing that, but he'd really had it. He said later that he knew he could do that because I'd be there to help him get going again when he was ready.

    I did a lot of crying in the bathroom and (some nights) shots of whiskey (I don't recommend that second one).

    I said it before - being a caregiver is a very lonely job sometimes.

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