Better off dead???
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Hi Carol and anyone else this might be useful for.
The telephone number for IHCS (In Home Care Services) for California is 888-944-4477. This number is for California but if you are in a different state they might be able to direct you to a similar program in your area.
Christina
Hi Carol,
I felt every word. I just applied for a service California IHCS (in home care services) basically they pay you to take care of a loved one. It is not much but anything helps. Now this is for California and I am not sure what state you live in but I am sure you state will have similar programs. Maybe you can call them and find out. I don’t have the number with me right now because I am at work but I promise I will get it to you a.s.a.p. The maximum hours they give is 200 a month 50 hours a week and they don’t pay much but you can definitely do that on top of your part time job and well like I said anything helps. I know this. I am the sole provider for our household and it gets so hard trying to stay on top of everything. I try to remain calm in front of Chucks so that he doesn’t feel my stress on top of his but sometimes it gets so hard. I get so overwhelmed and just feel like I have no one to turn to. His family doesn’t help. I have my mom and sister that have been life savers. My sister works afternoons and has been taking him to the doctor 3-4 times a week so that I can work and when she is not available, my mom takes him. I know there is also a program where they transport the people to their chemo appointments but he wants someone familiar there with him and so do I. I will repost the number the end of today or early tomorrow.
Wishing and praying for the best,
ChristinaTo everyone who is going through the heartbreak of this horrible disease — my prayers go out to all of you! I ask God to please give you the strength and hope for better days. God bless all of you!!
~~ JeanAll,
There is a U.S. non-profit that can provide assistance with medical bills. Currently, they do not have any of the hepatobiliary cancers listed as cancers that they service. However, I’m in the process of working with them to add bile duct cancer, as well as gall bladder and liver cancers to their list of cancers for support.
http://www.patientadvocate.org/index.php
You’re absolutely right – this is a huge failure of the U.S. medical system. There should be no reason that anyone should have to face daunting medical bills at such a difficult time in life.
My heart just breaks to hear these stories. Big hugs to everyone, and I’ll let you know if I make headway with this group on adding bile duct cancer to their list.
We are very lucky as Teddy works for some guys he knew as babies who have a big produce company here and he goes in 3 days a week and does financial
work for them. But what an IDEA you have. We should do a circuit of TV talk shows and bring light to this monstrous disease!!! Have an entourage of say
2 moderators a patient and a caretaker. What an idea!!!! If ya don’t yell out no one will hear you!!!!!It really is sad in this country, at this time in history, any of us are having to deal with all of this. I don’t want to get political but we must have some sort of universal health care for every citizen in this country. We should not have to deal with all of these financial issues when we are fighting for our lives-it’s inhumane!! Anyway my husband did not have any insurance when he was diagnosed. He worked very hard in his early fifties to become licensed to teach high school science(because there were tons of openings for science teachers !!) but after completing his studies all he was able to get were temporary one year contracts. They always replaced him with younger people. He had worked the year before he was diagnosed and was on unemployment up until about three months before he got sick. We couldn’t afford the Cobra deal- it was $1600/ month for both of us. We were just in the process of trying to get approved for a major medical policy( he had been denied previously due to being overweight and having high blood pressure) when he became ill. I remember my first thought when he became ill and an ambulance was called was- oh no. we don’t have insurance, maybe I can just drive him to the ER. That’s sad. I had to start worrying about money from the first instant he was ill. It turned out that we were better off not having any insurance than we would have been with crappy insurance. The social workers were working with me within days to get him qualified for Medicaid and on SS disability. If we had insurance none of that would have happened-I’d have been on my own. It was VERY tough for a few weeks. We had to cash out his teachers retirement that he had worked so hard for, we each had some money in IRAs which we both had to cash out and I had to cash out my life insurance policy.We basically had to be impoverished as far as cash assets were concerned. We were lucky though because they did not hold our farm against us since it was our home and I was able to continue my little greenhouse business in order to pay our farm payment and taxes. Ohio’s medicaid program has paid for everything with no problems though, so I am very grateful. Even though neither one of us have any retirement left or savings etc it could have been a lot worse.My husband really gets down sometimes about our money situation. He feels well enough to work for someone but no one will hire him. He’s 60.5 years old with a very serious cancer. He would have to have good insurance and then what happens if he lost the job? We’d be right back to square one. He’ll be on Medicare by January so that will ease the financial restraints a little but I keep worrying that they will decide he isn’t disabled enough and kick him off, then what happens if he gets really sick again? It’s ridiculous. I’m going to write a book, maybe I can get on Oprah and talk about all of this! Ha!Ha! Mary
I’m 49, Charlie will be 53 in August. I’m just not quite to the point of wanting to move and downsize yet. In a few years when the kids are out of the house would be great. If we have to though, we will and wherever it is will be our home because we’ll be together. I’m just having a really hard time staying strong for everybody right now. I guess we all go through high’s and low’s and this is definitely a new low. He does tackle small jobs around the house when he can and does a little photography when he has energy. He can’t work, even part-time. I really am glad things are going so well for you and your husband Lainy. Like I said, I just need a place to share my frustrations with people that are going through some of the same things.
All problems and answers are different for each of us. I guess I just want to share with my friends here that, “Yeah, I know, this really sucks sometimes” and then things get better. Thanks for listening.
Carol
Carol, everything you are feeling is sadly, normal. When Teddy had his Whipple
3 years ago I totally took everything away from him and never gave it back. Paying bills, anything to do with the household, you name it I do it. Now that the cancer is back NOBODY knows how stressed I can get. I hide it well, if I am going somewhere in the car alone I can let out a scream and that helps. He is still pushing to work part time and its the best thing for him. Its the best thing for me! What about giving Charlie a project like taking as many photograhs of
the family as he can and making books of them for the children? He needs to do something special, anything. I know its hard but you are feeding negatively on each other. I put together a girls night out where we live, there are 8 of us and once a month we go out like to a dinner and a movie. Honestly it gives me something else to look forward too. One of Teddy’s daughter’s organized a family weekend over Labor Day and there will be a lot of kids and grandkids flying in to spend the weekend with him. The nice things is they are all staying at a hotel and are not letting us do a thing. There will be 25 of us and he is so
thrilled and is concentrating on that. If you both could just get over this one huge hump then your stress would be a tad better because you once again would be leaning on each other. Sorry, I didn’t mean to dribble on, I am not a psychiatrist or anything, just unfortunately my own experiences. I am thinking about you!You’re right Lainy. I do think he feels like he’s failed us. He’s been a professional photographer for 30 years. He loves to do kid’s sports leagues. That has been taken away from him. He no longer has the energy and stamina to be able to do those kind of jobs. It’s like everything he loves has been taken away from him, but not us. I can’t imagine how that makes him feel. We’re all so tied to this house. It’s our shelter and refuge. It’s the only house the kids have known. I’m afraid if we move to an apt. it will be just one more huge change that makes everybody feel like “what’s the use?” That’s what Charlie keeps saying. I don’t know if it would be the right time to uproot us all…as you say Charlie sees these things as his failings. I know it’s not the end of the world, but with Charlie’s state of mind, I think it would be a huge blow. I’ll have to think more about it. With the economy the way it is, houses have been sitting for 6 months, a year and more here.
Patty, it’s BB&T in Winston-Salem, NC. I don’t want this to be about me begging for money. I really just needed somewhere to get this all out. I’m really falling apart. Thanks a lot.
Sophie, Kristin, Patty and Lainy – Thank you all so much. You all don’t know what it means to me to be able to “talk” with you. You know what we’re going through. No one else really understands. You’re all angels to take the time to respond. I’m trying to hang on. After 14 months of keeping everything and everybody together, the “strong one” Mom is losing it. It’s doubly hard because Charlie and I have always been best friends and talked about and shared everything. Now, it’s like I take it all on myself and shield him from things (stressors, financial concerns, insurance) as best I can. I think it’s finally just getting to be too much for me. I’m very emotional. I cry all the time. I’m trying to stay strong, but it’s a very hard patch we’re going through right now. I hang onto my faith or I would really lose my sanity. Heartfelt thanks to all of you!
Carol
Hugs (((((((((( Carol )))))))))))
My heart goes out to you.
We are all here for you, sending wishes of peace, hope, and healing your way.
Kristin
Dear Carol,
Your post just absolutely broke my heart because I can so empathize with you. It just beats one down to fight the insurance company when one is already struggling with so much. I don’t think Charlie is alone when at a really down point the thought of the family being better off without him surfaces. I believe it hits us all, but when he looks at your face, Carol, and the faces of his children and realizes how much you all love him and need him, hopefully it will give him heart to shake his fist at this horrible disease.
I pray God wraps his arms around your family and comforts you and that there is a turn for the better..that something happens to buoy you and Charlie up.
My prayers for you, Carol and Charlie
Sophie
Carol, we have just put our house up for sale and when sold, we will be moving to an apartment. I want the freedom and non stress of not being tied to the house and I want the equity in the house just in case Teddy has to stop working. To me a house is just an object, a home is where ever you make it. We don’t have any animals so that is not a problem. 10 years ago my daughter got divorced and moved to an apartment with 4 kids and took in day care. It got her through. Selling a house and moving to an apartment is not the end of the world. I know these are mere words but I always have told my kids that just when things are at their lowest something happens that turns it all around. They tell me its true. You have to stay strong for your children and know that the decisions you make will be the right ones. Perhaps Charlie feels he has failed all of you and that is hard for a man to feel that way. I look upon it as a new adventure, the next progression of our lives. We will pray for you and your family that things will turn around for all of you! You can make it happen!
Quote from Christina (Chrissy23) on 7/18/08
“At a time like this financial issues should be the least of our worries but for some reason (for us as well) it becomes the main concern.”Christina, this really hit home with me. We’ve been so frustrated with money concerns and insurance problems that today Charlie said that me and the kids would have been better off if he would have already died. Can you believe it? It breaks my heart. I know he doesn’t really mean it, (I pray he doesn’t), but that’s a frustrated man and that kind of negative thinking can’t be good for his well being either. It seems like every day, there’s some new battle for us to fight. A $2,800 bill from the hospital that Blue Cross says didn’t get approved for radio frequency ablation, our daughter couldn’t get her medicine today because the pharmacy said she’s no longer insured. But we never got any information about COBRA or anything and I’ve been calling and asking for months. We might as well throw in the towel if we’re not covered anymore. Charlie doesn’t get Medicare until 5/09. He has Medicaid for 5/08 to 8/08. Don’t see how that can help because his Blue Cross has paid everything except the out of pocket we still can’t pay from Jan. and Feb. of this year. He was diagnosed 5/07, never able to go back to work. I lost my job in 6/07. No income until 12/07 when we got Soc. Sec. disability. I just started a part-time job in June with no benefits. He doesn’t want me to work more than that because he wants me with him and I want to be with him. We both feel like he’s living on borrowed time since things haven’t really been going so good. Tumors came back after resection within 3 months and he’s so tired all the time. The financial worries are just pulling us both down. I’m about to the end of my rope. Sell the house, move into an apartment with us, 2 teenagers, 3 cats and 1 dog?? It’s like the financial worries are taking all of our energy and strength that Charlie especially needs to be fighting this. He thinks it would be easier on all of us if he were just gone. I don’t want to lose him. I’m sick of this. I’m heartsick. I’m just about out of answers and energy to fight the big insurance company, the big hospital, the doctors. Savings is long gone, our church and others have helped us a lot, but how long can we hold our hands out for help? His sisters set up a medical fund at our bank and that helped a lot, but after a while, it just died out and it’s empty now. We were denied for food stamps. You must really have to have nothing to get those. The economy is so bad and more and more people need help now.
I also know we’ve got it better than a whole lot of people too. But I really can’t voice these concerns to friends or family members so I needed to do it here. I’m not asking for anyone to fix it because it can’t be fixed. I just needed to have somewhere I could go to really say how I feel and not be judged. This is that safe place for me. Please keep us in your prayers and I do all of you.
Carol
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