Frustrated with the system.

Dawnkarlie
Dawnkarlie Member Posts: 2
in Caregivers #1
Hello, I am new to these boards and I just really want to vent a little bit about the system that is "supposed" to help us. My husband,Daniel (43) was diagnosed with stage 4 colon cancer with mets to both the liver and the lungs a little over 2 months ago. We are at a loss about how we are going to survive this financialy. He is the only one in our home who works. I have been unemployed for over a year now and can't find work. Even if I wanted to work, I couldn't because there would be no one to take care of my husband and keep all these appointments in order. On top of this we have 5 children between us who also need our time and support.

Sorry to get off topic... My complaint is this, why can't we get some help from the government?? Dissability says because he's still trying to work they have to deny him. The welfare office said pretty much the same thing. He's working 20-30 hrs a week (enough to pay for our health insurance, which we get through his employer!) and bringing home almost nothing.

Dissability says after he quits his job then he will qualify, AFTER the 5 month waiting period!! We don't know if he even HAS 5 months. In the meantime, who's going to pay our house payment? Buy our groceries? Pay for our medications?

I am a type two diabetic with a bad back. I'm on multiple medications. My husband is also on multiple medications due to a heart attack he had back in April of 2010. We need the health insurance his working provides.

I am sooo lost here. We don't know what to do. No one seems to be able to help us. He is worried about me and our home and having food so he refuses to quit. BUT if he doesn't quit, he can't get any help.

I don't know what to do anymore and neither does he. So on top of worrying about whether or not the chemo is working and trying to take care of my husband I have to worry about loosing everything.

I don't want to give up, but, I can't take all this. It's driving me crazy. I can't sleep anymore for the stress. My family Dr keeps telling me that I have to take care of myself in order to be able to care for my husband but how am I supposed to do that??

I'm sorry for the long rant and all of my complaining. I just don't have anyone that I can talk to. My friends seem to have all dissapeared. My husband is my best friend, the person I share all my troubles with, it hurts him to know how worried I am. He keeps telling me that he's not afraid to die, he's afraid for me and my future...

Again, I'm sorry for the long rant. I'm just looking for answers to questions that I don't know who to ask.

Thanks for listening.

Comments

  • dianelynn41
    dianelynn41 Member Posts: 71
    #2
    the system
    Hello,

    I can relate to what you are going through. My husband has stage 3 rectal cancer, he quit working over a year ago and I work part time. We have no insurance, we are waiting to be denied on his disability (I know they will deny).
    We got lucky and found a charity program at the hospital in our county that provides a big discount on any procedure done at the hospital and everyone else is just going to have to take payments and be patient.
    We are lucky that my Mom is able to help us out fianancially otherwise I don't know what we would do.
    Have you checked into local food banks and the Cancer Society helps in some areas. And then there are places that will help paying health insurance co pays and premiums. Check out HealthWell.com.

    Good luck lots of info on this website, everyone is very helpful.
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #3
    Welcome
    Hi Dawn and Daniel and welcome to our caregivers discussion board. I agree with the others, seek financial help from other places. Call the ACS. They helped me with gas reimbusement when I had to take my dad for his chemo treatments. Call your church or a local church, or food bank. They would be willing to help you with food. Ask at the hospital if there is any financial help available. Feel free to come here and rant and rave, that is what we are here for. Come lean on us anytime. Keep us up to date.
    Tina in Va
  • geotina
    geotina Member Posts: 2,111 Member
    #4
    Hi Dawn:
    I'm usually on th colorectal board so I would like to invite you to post there also, there is a wealth of information about anything and everything relating to colorectal cancer. My husband also has Stage IV colon cancer, mets to the liver and lungs, diagnosed 3/09.

    Lets break this down. If you are going after social security disability, you can't work. Stage IV is generally immediately approved. If you look at your social security print out you get yearly, it will tell you the exact amount you are entitled to and if you have minor children, you can collect for them also, the printout will tell you the amount, there is a maximum. If you don't have one of these print outs that social security sends you go to their web site and request one and they will get it out to you so you will have some exact figures to work with. There is a waiting period while it is being processed but I think you will get a check back to the date you apply. The people at SS are teriffic so don't hesitate to call, if the lines are busy leave your telephone number and they will call you back.

    My husband continues to work although it is getting tough for him and the only reason for this is health insurance. I hate it but it is what it is. There is a member on our board, a sigle mom with 3 boys, who has Stage IV and could not work nor could she afford the COBRA payment when she was forced to stop working. Anyway, there was some Federal Government Obama program that helped her. Instead of paying upwards of $1600. per month for health insnurance it brought her payment down to right around $400. Don't know the exact figure but it is something you could research. Don't know if the program is still in effect but well worth your checking out.

    As far as friends disappearing, unfortunately, it happens all the time, so don't stress over it. Heck, I have a sister that when I told about my hubby's cancer actually said, I hope he feels better. Oh well, she is a bit selfish and always will be. On the other hand, George has friends that are around more now than ever, and every week give him a call and out to lunch they go. You will learn that some people just don't know what to say or do but if you ask them to do something for you they can't do it fast enough. The word cancer scares people so much and they don't know what to say so they say nothing.

    There are organizations that do offer financial support but they do run out of funds quickly so anything you find, apply for. The American Cancer Society does have programs that help with transportation costs so check that out. Every little bit helps. They also may be able to point you in the right direction for financial assistance programs.

    Take care and I encourage you to come over to the colorectal board even if it is just to say hello. They are a tremendous wealth of information and support and I don't know if I could have survivied as a caregiver these last two years without these wonderful people - Tina
  • Pennymac02
    Pennymac02 Member Posts: 332 Member
    #5
    Disability
    My husband was caught in the same no win situation with disability. Through doing a little research, I was able to locate something in the social security rules called a "compassionate allowance". It applied for him because of his cancer. According to SSDI, some diagnosis are so severe that they warrant an immediate payment of disability, and his liver cancer qualified. He had been wrestling with disability for 12 months. But with the compassionate allowance he got his disability back pay and payments in about 30 days. Hope this helps.
    Penny
  • geotina
    geotina Member Posts: 2,111 Member
    #6
    Pennymac02 said:

    Disability
    My husband was caught in the same no win situation with disability. Through doing a little research, I was able to locate something in the social security rules called a "compassionate allowance". It applied for him because of his cancer. According to SSDI, some diagnosis are so severe that they warrant an immediate payment of disability, and his liver cancer qualified. He had been wrestling with disability for 12 months. But with the compassionate allowance he got his disability back pay and payments in about 30 days. Hope this helps.
    Penny

    Penny:
    That is wonderful information, thank you for sharing. So many are caught in a financial mess while dealing with cancer. Stage IV cancer should qualify. You need to know the right questions to ask and loopholes to jump through.

    Best regards - Tina
  • tanker sgv
    tanker sgv Member Posts: 124
    #7
    geotina said:

    Penny:
    That is wonderful information, thank you for sharing. So many are caught in a financial mess while dealing with cancer. Stage IV cancer should qualify. You need to know the right questions to ask and loopholes to jump through.

    Best regards - Tina

    try a website called
    try a website called servises.govit might take a while but you should find a list of government services . not knowing what state your from its hard to narrow down but google is a great resource what i found out was if you add dot gov to the end of any search it helps narrow the margine. it does take time and is easy to get frustrated because they try to group benefits together like the perscription drug and vission program one has nothing to do with the other but they were passed under the same bill. and in california the only cancer programs are for breast,cervical, and prostate cancer. also if you have kaiser you can contact member services and ask about the Medical Financial Assistance Program (MFAP) if you dont quallifey for ssi or medicare they pay All copays its a lifesaver cause 15 BUCKS HERE AND THERE ADDS UP. i know what your going through just stay strong and if you find time check out a website i created to bring awerness to this exact problem http://www.causes.com/causes/557289-a-ribbon-for-all-cancers

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