Guest shannygirl Posted February 26, 2007 Share Posted February 26, 2007 Hello, I'm hoping someone can help me. My step-father is 45 and was diagnosed with lung cancer this past August. He has had 2 tumors removed from his brain, had whole brain radiation and tomotheraphy on the tumor in his lung. This has all happened since August. In the past month and a half my Dad has started urinating everywhere but in the toilet, is combative and at times somewhat violent. He doesn't know what is going on, what the date is, etc. They just found something on his brain. Whatever that "something" is, is causing his brain to swell. He goes in for a pet scan next week to determine if it is another tumor or something else. I am so worried about my Mom. She is working full-time and was forced to put my Dad into hospice on a short term basis until his faculties return to him. She spent an entire day calling around trying to find some assistance and hospice was about the only alternative she found. The dr's are talking that my Dad may have necrosis. If that is the case, I don't know if my Dad will ever be "normal" again. Does anyone have some ideas as to how my Mom can get some assistance with my Dad? She can't stop working to take care of him because he relies on her insurance. She can't afford $2,000 a month to put him in a nursing facility. My Mom lives in Las Vegas, NV. and she says there is no help to be had. The Dr. thinks my Mom should just throw her husband in hospice and give up on him. She was told by another Dr. that her husband is actually very healthy and would surpass the 6 month time limit that hospice has in place. It just disgusts me that a middle class woman who works herself into the ground trying to support herself and her husband, on top of cleaning up urine, vomit and feces every day can't get any type of assistance unless she either gives up on my Dad or divorces him. She was told his Medicare would go into effect in August (after a year), but someone told her the other day that it takes 2 years to go into effect. I live in another state and am hoping Medicare goes into effect soon so that my Mom and Dad can move in with me and I can help take care of my Dad. I worry about the mental, physical and financial toll this is taking on my Mom. My heart is broke for her and my heart is broke for my Dad. It's bad enough to be dying of lung cancer. It seems so unfair that my Dad should lose his mental faculties too. Quite frankly, I don't know who my heart hurts worse for, my Mom or my Dad. Thank you all for listening. If anyone has some suggestions or advice, I'd greatly appreciate it. My thoughts and prayers are with all of you. Quote Link to comment Share on other sites More sharing options...
wendyr Posted February 26, 2007 Share Posted February 26, 2007 I am so sorry to hear of your Dad's illness and the hardship on your Mom. I'm not real sure about this, but I think he will qualify for Social Security Disability. One of our neighbors who has cancer is in his mid 50's and got on social security in just a matter of weeks. Please check with your Social Security Office to get more information and hopefully a little relief. Perhaps there are others here that can give you more complete information. Good Luck & God Bless wendy Quote Link to comment Share on other sites More sharing options...
kamataca Posted February 26, 2007 Share Posted February 26, 2007 I am just so sorry you are all going through this right now. It sounds heartbreaking. Make sure your mom doesn't take "someone's" word for anything. Call Medicare....call Social Security...call the American Cancer Society...anyone and everyone. Surely there is someone who has real information. I pray your mom gets some relief soon. Keep us posted. Kelly Quote Link to comment Share on other sites More sharing options...
donnalee Posted February 26, 2007 Share Posted February 26, 2007 Although it may not seem like it, the hospice facility your Dad is in might be the best for everyone. It doesn't mean that everyone has given up on him. Hospice care can make the time your Dad has left more comfortable and help your Mom as well. You should talk with a social worker at the facility so that they can explain what hospice is all about. If your Dad is receiving Social Security Disability, then Medicare will start 5 months after he was declared disabled. I know how hard it is to deal with all of this. Quote Link to comment Share on other sites More sharing options...
Ann Posted February 26, 2007 Share Posted February 26, 2007 My heart is breaking for your mom and all she is going through right now. The pain that cancer causes to patients and family members shouldn't be ampliefied by finances right now. Many of us have dealt with Hospice, either in-home or at one of their facilities. Most experiences have been good ones. Please check with Social Security and express your needs to them. It's my understanding that cancer patients, in some circumstances, don't have such a long wait time before their Medicare goes into action. Possibly, Medicaid (run by each state) could help you in the meantime. I do understand what your mom is dealing with, as I too had to work to keep the insurance going for my husband. I'll be keeping your family in my prayers. Quote Link to comment Share on other sites More sharing options...
Nick C Posted February 26, 2007 Share Posted February 26, 2007 I am so sorry you have found yourself in this situation... Hospice isn't "giving up" on someone. It is caring for them the best you know how given the situation. And I would find a different doctor who will agree your step fathers state warrants he be in hospice. Quote Link to comment Share on other sites More sharing options...
Guest shannygirl Posted February 26, 2007 Share Posted February 26, 2007 I just want to say thank you to all of you who responded to my post. My Mom has nothing but good to say about hospice. The problem is that my Dad is really not close to passing anytime soon. He's only there because he's pretty much out of his mind and my Mom can't just leave him alone in the house while she goes to work. It's a temporary fix to the situation. As soon as (if) my Dad gets his wits about him again, he'll have to go home. Also, I understand that hospice isn't about giving up on anyone. However, that's almost how my Mom feels. Technically, she could just leave him in there for the alloted 6 months. However, that means no tests to determine if the cancer is in his brain, if it has spread, etc. Basically, she feels she would be giving up on him just to make her life easier as far as having someone take care of him. That isn't acceptable to her or myself. She already has to sign him out this week so she can get him a pet scan done. Then, if he is still not in his right mind, she'll have to sign him back into hospice. She called the American Cancer Society and every other society and organization she could find. She talked to social workers, case managers, etc. The only way my Dad will qualify for Medicaid is if my Mom divorces him. She wont do that because she wont have any say in his medical care. His children don't have anything to do with him (his daughter told him she didn't care if he dies), and his Mom is too busy attending dinner parties and getting her hair done to come up and help out a little. Obviously, my Mom isn't leaving her husband's care in the hands of those type of people. I just really worry about the stress my Mom is dealing with everyday. She says it takes all she has to wake up and go to work. Maybe I can talk her into writing all of you. I think it would help her a lot. You all know what she is going through. I just pray God restores my Dad's mental faculties, gets my parent's some help and allows them to enjoy the time my Dad has left. Thank you all again for your words of enoucragement and support. I prayed for all of you last night Quote Link to comment Share on other sites More sharing options...
wendyr Posted February 26, 2007 Share Posted February 26, 2007 Dear Shannygirl: please give social security a call or check their website. You can view the website to determine if your Dad is eligle for social security. Good Luck & God Bless wendy Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted February 26, 2007 Share Posted February 26, 2007 If he worked when he was healthy (I think for 6 conscutive quarters), then he should qualify for social security. My mom had readiation necrosis and was tested for "Hyperbaric Oxygen Thrapy", but her lung functin was compromised so she was not eligible. It is an idea if he is in good shape though-could help the mental symptoms. I am so sorry for what is happening. It is horrible to have to deal with all of this in top of the possible loss of a loved one. I understand. Please feel free to PM me and I will try to help you investigate stuff too. BTW, the Patient Advocate Foundation helped me out with insurance stuff, so maybe they could help you. Quote Link to comment Share on other sites More sharing options...
donnalee Posted February 26, 2007 Share Posted February 26, 2007 I mispoke in my earlier post. The waiting time for medicare is 24 months after being declared disabled and as far as I know there are no exceptions for cancer patients - just people with kidney disease and ALS. I've been trying to think of some suggestions to help your Mom, but unfortunately the health care system doesn't provide for much in the way of outpatient caregiving - even if he did have medicare or medicaid. Could your Mom take Family Leave time from her job? Quote Link to comment Share on other sites More sharing options...
wendyr Posted February 27, 2007 Share Posted February 27, 2007 Shannygirl: I just came off the social security website. Go to www.ssa.gov/disability/ As you navigate the site, you'll see that cancer is a disability & you can get the application process going by applying online. On the right side of the page under 'more information' you'll be able to see which cancers are covered & I think your Dad would qualify. Hope this helps. Please let us know if it works. Good Luck & God Bless Quote Link to comment Share on other sites More sharing options...
Nick C Posted February 27, 2007 Share Posted February 27, 2007 The problem is that my Dad is really not close to passing anytime soon. And that fact is wonderful, HOWEVER, no doctor can say this with any certainty. Stage IV, had brain surgery, WBR, treatment for his lung tumor etc..., there is a doctor out there somewhere who will go out on a limb and say hospice is appropriate. And by the way, if you do initiate hospice and 6 months passes, it isn't like they then say, "that's all you get"...it just a technicality to reup. And I read on this site before that Stage IV qualifies for disability benefits under Social security. Is there a social worker at your hospital you can talk to? Also, don't ever just accept a doctors verdict as final and absolute...they don't know everything. Quote Link to comment Share on other sites More sharing options...
Brandie721 Posted February 27, 2007 Share Posted February 27, 2007 Shannygirl - Hi. I understand where you are coming from. My Mom is in the same situation. Middle Class - not rich enough to pay out of pocket and not poor enough for Medicaid. We are about to run into a problem where she will run out of the skilled nursing facility benefit she gets via Medicare. She has had WBR and stereotactic radiosurgery. I have to say that mentally she is fairly close to being completely gone. She cannot complete the simplest of tasks by herself. It is the most horrible, painful thing to watch. it is sad that divorce from my father is the only option for her as well. I hope you find out some useful info from social security. Perhaps there is still an alternative. take care, Brandie Quote Link to comment Share on other sites More sharing options...
wendyr Posted February 28, 2007 Share Posted February 28, 2007 Shannygirl: I sent you a private message re social security. Hope it helps wendy Quote Link to comment Share on other sites More sharing options...
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