Balance

sleepy524
sleepy524 Member Posts: 20
edited March 2014 in Caregivers #1
Balance...

My fiance and I met when he was already three years into remission. We became inseperable. It was truly finding my soulmate. Finally felt like I was not missing something. I was a single mom raising three boys, one of which is disabled with no financial, physical or emotional help from my ex. I had felt broken my entire life until I met him. I was whole and when he proposed I couldn't say yes loud enough. A week later we were told the cancer was back and very aggressive this time. They say he is on the border of Stage 3 and 4. He already had his colon and rectum removed. This time it was set into his lymph nodes. So we do radiation five times per week and chemo Thurs & Fri.

So let's talk about balance. I think this is a fantasy. An unobtainable dream for caregivers. Here is my schedule since my fiance has been re-diagnosed with Stage 3-C Colon cancer. I am up at 5:30 to get two of my children off to school. Spend a few mins w/ the hubby, pack his lunch send him off to work. Get my youngest son ready for school, somewhere fit some makeup and high heels on and head out to work by 7:30. Work all day, usually run errands or do phone conferences to kids schools, doctors, etc during lunch. Pick kids up, home by 6:30. Dinner, cleaning, homework, bedtime for my three boys. Then in between there is everything else that comes with loving and adoring someone w/ cancer. "Honey you need to eat." "How are you feeling" "Did you take your meds?". I am fortunate in the midst of all of this my my fiance thanks me everyday for taking such good care of him and our family. Holds on to me at night and tells me I am beautiful. The part that hurts is the constant battle in my head wondering am I giving the kids enough attention, what if I don't take good enough care of Brian (fiance)? How do I discipline them without stressing him out? The part that angers me is the outsiders who feel their opinions need to be heard. "The kids want more time with you, you have to be a mother first." I am up at 5AM some days to help them study, making jack o lanterns and playing football with them. I have had to get to the point where I am angry not hurt anymore with this. I encourage one of those criticizers to walk in my shoes and to balance this plus the fear, heartache, worry. How is everyone else balancing this?

Comments

  • wifflefrog
    wifflefrog Member Posts: 31
    #2
    Amen
    I feel your pain, luckily I don't have those outside comments, just everyone wanting to help but not really know how or where to start. Also seeing that its all held together so well that all must be okay.
    Its absolutely tough and you know you can only do what you can. Hopefully your kids understand and enjoy every second they can get with you and him and each other. At least you have a great family bond.
    My dad consists of getting up around 6am, getting my 10 month old ready, asking my husband how all is going, prepare breakfast for us if possible. Drive my son to his grandparents, hopefully get to work around 9 if I am lucky. Some days I have earlier appointments. Then work all day & deal with appointments, insurance and medications. Then pick up my son by 5:30 hopefully get home at a good hour, but I do have errands to run. Then get some make dinner, any other errands. Hope the hubby is feeling well enough, feed the baby get him to bed. Of course somewehere in there find a bit of time for me. Hopefully go to bed early, but either hubby or baby are up like 2-3 times a night.
    I do what I can.... if someone said any of those comments to me I give them this run down & tell me how to possible squeeze in anything else.
    So good luck and keep doing what you are doing sounds to me you are doing a wonderful job.
    I wish you so much luck and that all goes well and your wedding day will be beautiful.
  • kimmygarland
    kimmygarland Member Posts: 312
    #3
    wifflefrog said:

    Amen
    I feel your pain, luckily I don't have those outside comments, just everyone wanting to help but not really know how or where to start. Also seeing that its all held together so well that all must be okay.
    Its absolutely tough and you know you can only do what you can. Hopefully your kids understand and enjoy every second they can get with you and him and each other. At least you have a great family bond.
    My dad consists of getting up around 6am, getting my 10 month old ready, asking my husband how all is going, prepare breakfast for us if possible. Drive my son to his grandparents, hopefully get to work around 9 if I am lucky. Some days I have earlier appointments. Then work all day & deal with appointments, insurance and medications. Then pick up my son by 5:30 hopefully get home at a good hour, but I do have errands to run. Then get some make dinner, any other errands. Hope the hubby is feeling well enough, feed the baby get him to bed. Of course somewehere in there find a bit of time for me. Hopefully go to bed early, but either hubby or baby are up like 2-3 times a night.
    I do what I can.... if someone said any of those comments to me I give them this run down & tell me how to possible squeeze in anything else.
    So good luck and keep doing what you are doing sounds to me you are doing a wonderful job.
    I wish you so much luck and that all goes well and your wedding day will be beautiful.

    Completely Understand
    I am so thankful our son is grown, and instead of having to take care of him, he is helping me take care of my husband, his dad.

    It is indeed, a balancing act. Is there any way you could flex your time at work some how or maybe work from home some days? My husband had surgery 6 weeks ago, and I was very lucky in that my employer allowed me to work from home for a couple of weeks (after taking 2 weeks off). I know that's not possible in every job though.

    Do you have any family support that could help you?

    Oh, and the comments.... people think they are being helpful but it is so annoying sometimes. And usually their comments make me feel guilty, as they are pointing out something they think I am not doing or should do better.

    Hang in there, I hope it somehow gets better soon.
  • Luv2lunch
    Luv2lunch Member Posts: 270
    #4
    Hi Sleepy,
    I'm sorry. You
    Hi Sleepy,
    I'm sorry. You definately have a lot on your plate. You do sound like you are dealing the best you can and I admire you.
    I have learned to just take one day at a time. Every day is different.
    I don't have children but Mom (who has rectal cancer), moved in with my husband and me in April. My husband is disabled and does not work. We have no children but two dogs. I am currently working part time, 20 hours a week. I am at work by 6:30 a.m. Once home, my life is not mine, it is everyone elses.
    My Mom is everything to me. She is now 79 years old. My husband is very resentful that she is still here, so I am having to deal with that on top of my Mom's illness. It makes it very difficult. It makes me very sad and angry, all at the same time.
    I wish I could give you some great advice on a balancing act, but I have none. I just plug along day by day.
    Spend your free time with Brian, whenever you can. Cherish those times. He sounds like a wonderful person, making you feel appreciated and loved, that is special.
    I'll keep you both in my thoughts and prayers. I hope you will find the right "balance" that works for your whole family.
    Take care,
    Linda
  • sleepy524
    sleepy524 Member Posts: 20
    #5
    kimmygarland said:

    Completely Understand
    I am so thankful our son is grown, and instead of having to take care of him, he is helping me take care of my husband, his dad.

    It is indeed, a balancing act. Is there any way you could flex your time at work some how or maybe work from home some days? My husband had surgery 6 weeks ago, and I was very lucky in that my employer allowed me to work from home for a couple of weeks (after taking 2 weeks off). I know that's not possible in every job though.

    Do you have any family support that could help you?

    Oh, and the comments.... people think they are being helpful but it is so annoying sometimes. And usually their comments make me feel guilty, as they are pointing out something they think I am not doing or should do better.

    Hang in there, I hope it somehow gets better soon.

    Wish there was something I
    Wish there was something I could do at work like that. They have allowed me a few extra unpaid sick days if I need it to be with him. My family all lives about an hour away. His family is 11 hours away. I am sure somehow at some point we will settle into a routine but right now just feels overwhelming. Is it ok to tell Brian I am overwhelmed? I feel unsure of what to share with him and what not to share. We have no secrets but I need him to see strength in me. Where is the book of answers about this???
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #6
    sleepy524 said:

    Wish there was something I
    Wish there was something I could do at work like that. They have allowed me a few extra unpaid sick days if I need it to be with him. My family all lives about an hour away. His family is 11 hours away. I am sure somehow at some point we will settle into a routine but right now just feels overwhelming. Is it ok to tell Brian I am overwhelmed? I feel unsure of what to share with him and what not to share. We have no secrets but I need him to see strength in me. Where is the book of answers about this???

    Telling
    I can only tell you that I shared my feelings with my husband. I often found that he was feeling the same way. We were partners in his fight against cancer and when I told him what I was thinking I felt that we were in it together. Also, at times, he needed to be the strong one for me. It made him feel a little more in charge of things. Only you can know what is right for you and your family, though. Fay
  • Pennymac02
    Pennymac02 Member Posts: 332 Member
    #7
    Not
    Sleepy,
    If you find out where the balance is, could you let me know? I seem to have lost mine.

    I've used up all my sick days for my husbands illness, the thought of me getting sick terrifies me because I'm our only income. He potentially will be put on a liver transplant list through the V.A., no telling when that will happen but it will mean a mimimum of 4 weeks off for me, hopefully FMLA. Yesterday I worked 12 hours, have a 15 hour day today, need to have the oil changed in my car, the yard needs raked; my sons are grown, so I'm not doing the kids school thing, but we caregivers haved it rough as far as schedules. Not to mention, the concern and worry over watching our loved ones get sicker despite our best efforts at control. Sigh. I just take it one day at a time, sometimes one hour at a time, sometimes the next five minutes at a time. The big picture scares and overwhelms me. I pray a lot, meditate a lot, and try to grab some time alone when I can. These boards help me more than I can say.
    wishing you well,
    Penny
  • ruthelizabeth
    ruthelizabeth Member Posts: 138
    #8
    You have my gold star.
    It sounds as if you're covering every base there is and then some. People who haven't gone thru this have no idea what it's like.

    I think that your kids will one day remember how loving and strong (yes, it's a terrible compliment) you are being.

    I watched my mom balance three kids, the housework and cooking, a 7-day-a-week business and caring for my grandfather night and day for 12 weeks. She looked older then than she did when she was in her 80's. I remember her and I honor her for all that she did. Your children will, too.

    When Don was sick, I worked full-time until about 6 weeks before he died. I was up a lot at night, sometimes because he felt bad and sometimes because I couldn't sleep. I didn't have kids, but we coped with his four -- which is a whole 'nother story. The last six weeks my job gave me paid leave. His son was coming in from 10AM to 6PM. I took care of Don the rest of the time, then cooked (Don and I weren't eating much, but his son weighed 300+) and fought with the bank and did errands, etc. all day. Looking back, I don't know how I did it.

    Try hard to ignore people's comments and ignorance. If you're lucky, you'll find some who really do care and can help in some way. Meantime come here and let us give you support.
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #9
    Welcome
    Hello Sleepy524
    I am pretty sure I met you on chat today. God bless you and all that you do for your fiance and family! You are a wonderful mom and caregiver. You are doing a great job, but I fear that soon you will burn out. Burning the candle at both ends gets old real fast. Do you have anyone that can help you at any time? Help pick the kids up, make dinner, help with homework etc. You are only one person, you can not do it all. May God give you the strength and patience you will need to continue on with this journey with cancer!
    Tina in Va
  • sleepy524
    sleepy524 Member Posts: 20
    #10
    Tina Blondek said:

    Welcome
    Hello Sleepy524
    I am pretty sure I met you on chat today. God bless you and all that you do for your fiance and family! You are a wonderful mom and caregiver. You are doing a great job, but I fear that soon you will burn out. Burning the candle at both ends gets old real fast. Do you have anyone that can help you at any time? Help pick the kids up, make dinner, help with homework etc. You are only one person, you can not do it all. May God give you the strength and patience you will need to continue on with this journey with cancer!
    Tina in Va

    Hi Tina, so glad I met you.
    Hi Tina, so glad I met you. Yes I am realizing that rather quickly. This week I found myself with extreme stomach pains, insomnia and tension headaches. I am absolutely terrified of getting sick knowing how much we rely on my income and my physical strength. I am trying to find a way even if it means a short walk around the block for half an hour a day. Wanna look good in that wedding dress anyways right lol. But to help not really. Parents may take the kids for a sleepover once a month. Not on the day to day stuff. Looking into a support group nearby so that maybe finding others struggling w/ the balance is something we can help eachother deal with. I am just not sure yet. I just dont really know right now. It can be so overwhelming as you well know. Thank you for your kind words and uplifting presence.
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #11
    sleepy524 said:

    Hi Tina, so glad I met you.
    Hi Tina, so glad I met you. Yes I am realizing that rather quickly. This week I found myself with extreme stomach pains, insomnia and tension headaches. I am absolutely terrified of getting sick knowing how much we rely on my income and my physical strength. I am trying to find a way even if it means a short walk around the block for half an hour a day. Wanna look good in that wedding dress anyways right lol. But to help not really. Parents may take the kids for a sleepover once a month. Not on the day to day stuff. Looking into a support group nearby so that maybe finding others struggling w/ the balance is something we can help eachother deal with. I am just not sure yet. I just dont really know right now. It can be so overwhelming as you well know. Thank you for your kind words and uplifting presence.

    Hi Sleepy,
    You just hang in
    Hi Sleepy,
    You just hang in there. Why don't you talk to your parents about all of this. Get it all off your chest. Maybe they will respond with taking them once a week instead of once a month! I will be thinking of you and praying for you all.
    Tina in Va
  • Carrie King
    Carrie King Member Posts: 48
    #12
    sleepy524 said:

    Hi Tina, so glad I met you.
    Hi Tina, so glad I met you. Yes I am realizing that rather quickly. This week I found myself with extreme stomach pains, insomnia and tension headaches. I am absolutely terrified of getting sick knowing how much we rely on my income and my physical strength. I am trying to find a way even if it means a short walk around the block for half an hour a day. Wanna look good in that wedding dress anyways right lol. But to help not really. Parents may take the kids for a sleepover once a month. Not on the day to day stuff. Looking into a support group nearby so that maybe finding others struggling w/ the balance is something we can help eachother deal with. I am just not sure yet. I just dont really know right now. It can be so overwhelming as you well know. Thank you for your kind words and uplifting presence.

    Sleepy524
    Reading your posts, I swear they are me! Find the support group -- I have seen them sponsored at churches or even hospitals. I walk too, it really helps the energy level and frustration ! I suffered extreme neck pain after my husbands diagnosis and of course insomnia. Hard to believe, because I didn't, things will get "more manageable" in time.

    Don't neglect yourself as when I do that NO ONE is benefiting. I want to concentrate on "making every moment count". However, every moment is not picture perfect like I was trying to make it be at first.

    I really find this site is so helpful with people who actually CAN RELATE.

    My prayers are with you!

    Carrie
  • cher8871
    cher8871 Member Posts: 64
    #13
    wow
    i also struggle to find the balance in taking care of my dad (NSCLC w/mets to brain, dx april 2010) and giving the appropriate attention to my hubby and son. my son is 9 and he hates living in my dads house. i have approached dad about moving in with us but sometimes i don't think he understands what i'm saying. his cancer has effected his balance and vision. he is dizzy 24/7!!

    back to the balance....i am going to have to send my little man to see a therapist. this is causing problems with his schoolwork and his attitude...i'm sure being 9 doesn't help any either. we moved in with dad in oct of last year...hubby and i both lost our jobs and then our house.....was on the verge of moving out when dad was diagnosed. there went that idea! i struggled a long time with the guilt of being mad!!! mad that i had to go through this, mad that i couldn't go and do what i wanted, mad that i can't spend enough time with my son! my hubby has been really great through all of this! he stayed home this summer with dad so that i could work part time. now we've switched and he's working while i stay home. good news is we got our house back, thanks to hubby's grandfather but now, it's even worse for my son. he knows we can live in OUR house but also knows that his papaw is sick and we have to take care of him. i am an only child.

    i know i am rambling....i do it alot! i even talk to myself now. wondering if i've done and am doing everything i can for everyone else. sometimes i'm happy to just go to the grocery so i can be by myself......i feel guilty for thinking about the future but have to realize we (me, hubby and son) are ok and we HAVE to think about the future.


    i pray you find balance!
    cheri

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