mamasbabygirl Posted March 17, 2006 Share Posted March 17, 2006 Unfortunately, I was unable to go to the visit bc of work today, but John (my better half), SF and mom's best friend Hazel were there. I just got a call from John who was telling me the details. First off, I have to let you know that as of yesterday, mom's insurance said "no more rehab" bc of her poor prognosis. We are appealing the decision of course but the therapist said she has never seen Anthem overturn their decision. When I talked to mom about it yesterday, she asked why they are saying no to more rehab. So, I told her the truth, that they said bc of her prognosis. She asked what that was and I said "well, she is not God, but I guess bc you have LC." I also told her that her neurosurgeon told us average life expectancy was 1 year after brachytherapy, but those are just statisitics. She seemed shocked and she said she thought she was cured. I told her she is not, but things are stable. She told me thanks for being honest. So, move forward to the appointment today. Mom asks the neurosurgeon what her prognosis is and he said "good" and changed the subject. Do you guys think that is an honest and fair answer considering she thinks he cured her? Fast forward to later. John mentions that mom could come live with us and go to adult daycare with Granny (MIL). Mom asks questions and said it sounds fun. SF basically said no. He wants mom to stay at the nursing home, but she does not want to. I have asked before, but I am asking again. Am I overstepping my grounds here? Shouldn't it be her decision, not just his? I feel like I need to get my family involved to let Tom SF know that she can live her life how she wants. I get so aggravated. Quote Link to comment Share on other sites More sharing options...
karen335 Posted March 17, 2006 Share Posted March 17, 2006 Lori, Who gave your mom a "poor prognosis". The brain surgery I had two years ago said poor prognosis from neurosurgeon and he now after this surgery says guarded, whatever that means. Sounds like your mom is getting stronger each day. Her wants and needs are important. In talking to her, does it seem like she is of pretty sound mind? You know your mom, not just wishful thinking on your part. Keep pursuing your mom's wishes and needs. Sounds like she wants to continue the fight. NEVER give up, keep the positive attitude. Sending lots of prayers. I just read the other day, brain mets are 87% beatable, especially with surgery.(Gold treatment) Hugs, Karen Quote Link to comment Share on other sites More sharing options...
stand4hope Posted March 17, 2006 Share Posted March 17, 2006 Dear Lori, What Karen said!! Also, as long as your mom is competent, I think you probably know the answer to the question as to whose decision it should be. The hard part, I'm sure, is getting past the pushy and controlling SF. Best of luck to you with this, honey. This is a hard one. Love you! Peggy Quote Link to comment Share on other sites More sharing options...
flwrjunke Posted March 17, 2006 Share Posted March 17, 2006 Lori, I think that you are very wise and you should go with your gut feeling. "Am I overstepping my grounds here? Shouldn't it be her decision, not just his?" No, your not overstepping! It should be her decision! Heck, I'd pick your house anyday over a nursing home. You have always had her best interest in mind, thank God she has you! Praying for you, Patty Quote Link to comment Share on other sites More sharing options...
Carleen Posted March 17, 2006 Share Posted March 17, 2006 Lori, Sorry to hear the the Insurance company is not approving any more rehab. I think it is great that you are appealing that, and maybe her doctor could write a letter to the insurance to help the situation. Especially since he feels her prognosis is "good". I think that telling your mom her prognosis is good is a reasonable response. No, she is not cured, but she is not in a place to give up hope yet either. She IS doing well right now dealing with what she has and keeping it stable. Now, I do also think it was wise of you to tell her the truth, it isn't right for her to think she was cured when she isn't because then she isn't making decisions from a well informed place. And just like ALL decisions about care and treatment should be up to the patient, I think that goes for life decisions as well. I don't care how wonderful a spouse your SF is, he doesn't have the right to make the decision as to where you mom stays if she has expressed a wish to the contrary. Your SF has made the ONLY decision he is entitled to, and that was his decision not to have her at home because he felt it was too hard on him. But from there, if your mom doesn't want to be at the nursing home, and you want her with you, that is where she should be. ANY other comments from your SF are just selfish and egocentric, and he is not justified in them. They are not thinking of your mom's best interest but his. And who the hell cares what HIS best interest is. So just screw him and do what is best for MOM. so far his decisions have been made on his point of view... what is easier on him for care, where should she go that is easier on him to visit, what should he tell her that is easier on him to tell about her condition, what situation make him feel less guilty while at the same time doesn't put him out any. I don't know him, and I may be wrong, but from past posts I get the impression your SF is very selfish, and I just plain old don't like him. You do what your mom wants, and what you feel in your heart is the best for her. With those intentions and love backing them up your decisions will never be the wrong ones. Lots of Love being sent your way Lori Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted March 17, 2006 Author Share Posted March 17, 2006 Karen, The "poor prognosis" came from the lady at the insurance company. Her words exactly to mom's physical therapist were "We were going to cancel her therapy before, but then she went in for more brain surgery and with her poor prognosis, we are not going to approve it any longer." The therapist replies "But she needs more therapy and her neurosurgeon said it would be a few more months before she would see improvement". The insurance lady replies "then she can get therapy at home!" The therapist was without words and very mad. Mom's Dr. is going to try to write a letter and call them to get more time and/or get her into the Drake Hospital's rehab program. Fingers crossed... Quote Link to comment Share on other sites More sharing options...
karen335 Posted March 17, 2006 Share Posted March 17, 2006 The lady at the insurance company (I'm assuming is NOT a doctor.) Who told HER your mom has or had a "poor prognosis" Ask her to provide a report or letter stating this prognosis. You need to SEE it for yourself. She needs to backup her statement. The letter from the neurosurgeon (says Good) should clear up her comment once he sends it to the insurance. Does your mom have a book or binder showing what her coverage is under her insurance plan? I have a book showing what my coverage is and if I need more I call the insurance directly and challenge them. I would question her and make sure you document all this information, including all conversations. Get names, dates and time(AM~PM)when you spoke to them. They are building a case and you need a rebuttal too. This is a lot of work for you and it's sad your SF is such a butt and won't help you. You are doing great. Wish I was closer, I would help you.In my prayers and thoughts. What oyu are doing is love for your mom and she IS so proud of you and knows she is loved. Hugs, Karen Quote Link to comment Share on other sites More sharing options...
Don M Posted March 17, 2006 Share Posted March 17, 2006 Lori: I guess you gather bynow that you should follow your mom's wishes regarding where she stays if you lose the therapy accomadations. You are not overstepping because it is what your mom wants to do. I think if you get support from the medical professionals, you may get the insurance decison overturned. Good luck. Don M Quote Link to comment Share on other sites More sharing options...
karen335 Posted March 17, 2006 Share Posted March 17, 2006 Praying mom can continue with rehab. Sounds like that is what Sandy wants to do. She just wants to get well. God Bless and prayers, Karen Quote Link to comment Share on other sites More sharing options...
Tami Posted March 17, 2006 Share Posted March 17, 2006 As the other's have said you have every right to have your mom at home with you. she wants it, you want it and so does your hubby. Those are the only people that matter. Honestly, I think you need to do this so that you will have the peace of mind of knowing that she received the best care and the most love that she could possibly receive. Whether she lives another year or another 50. I think that it would break your heart not to bring her home. Let's face it those places can not give the love and care that a loving family member can. Forgive ME for over stepping my bounds but I also think your SF is a very selfish man. Why wouldn't he want her to be with you getting the best possible care? Only a very unkind and selfish man would want anything else. Stand up straight and let him know that you will do what your mother wants. End of story. Tell him not to worry... when he gets sick you'll be more than happy to put his sorry little butt in that Nursing Home he likes so much.. Tami Quote Link to comment Share on other sites More sharing options...
Suzie Q Posted March 17, 2006 Share Posted March 17, 2006 Lori, You are doing exactly what you need to do. Perhaps the neurosurgeon could have been a bit more up front about er prognosis and given more info, such as how much neuro recovery he expects, but I suspect he was waiting for your mom to ask for more info. When she did not request more, he did not volunteer it. Many patients want only the bare minimum of info if they expect bad news. So teh doctors sometimes play it by ear and only tell them the info they wish to deal with right now. If you haven't already done so, get your mom to sign a Living will and Durable POA naming you as agent to make medical decisions for her should she become unable to do so. You have been the ONLY selfless one here working for HER best interests. I hope she agrees to it. Your SF sounds like a controlling person. He wants her in the nursing home because he has no control if she moves into your home. Best wishes to you. ~Suz Quote Link to comment Share on other sites More sharing options...
stand4hope Posted March 18, 2006 Share Posted March 18, 2006 Tell him not to worry... when he gets sick you'll be more than happy to put his sorry little butt in that Nursing Home he likes so much.. Oh, Tami, I laughed RIGHT OUT LOUD when I read that. Love, Peggy Quote Link to comment Share on other sites More sharing options...
Maryanne Posted March 20, 2006 Share Posted March 20, 2006 Lori, to me that is a no brainer...with your husbands permission, Definetely, your house over a nurising home... PERIOD!! She will be around people who love her. That will give her incentive and help her to heal. A nursing home will just bring her down. We don't want that. Maryanne Quote Link to comment Share on other sites More sharing options...
SBeth Posted March 21, 2006 Share Posted March 21, 2006 Okay Lori...I'm going to go out on a limb here and be really honest, keeping in mind that this is JUST MY OPINION. First, I'm glad that you were finally able to have that conversation with your Mom and now you know that YOU have given her the information she needs and there is no more wondering what she thinks her "medical" prognosis is. But, at the risk of saying anything bad about any particular neurosurgeon, if you are referring to Dr. "W" as being the one that told her things looked "good". That does not surprise me a bit. Recall, that he was one of Bill's neurosurgeons and the one that I liked the least. He would never give us the time we deserved, always in a big hurry and didn't want to be bothered with questions. I personally think that he would say things were "good" just to avoid further communication. Let's face it, at Stage IV, who wants to question "GOOD"? Anyway...all those bad vibes about Dr. W aside...I spent some time with you and your Mom and like I told you...SHE LOOKED GREAT. I was not expecting this lively, witty, happy person. I think your Mom is doing good, but I wouldn't put too much stock into what he tells you. Besides, they only know numbers and stats and we have all learned that all that is a bunch of bull. As for the issues with SF...I don't know what to tell you, except that you have given your Mom the facts she needs to make this decision for herself. I'm here if you need me! By the way, not sure if home email is working...but those pictures were GREAT. Thanks! Love, Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted March 21, 2006 Author Share Posted March 21, 2006 Yes, Beth. I also think Dr. W is setting my mom's expectations too high. I mean, why didn't he tell her what he told us,like "Avg life expectancy is 1 year" instead of just "good". But, as others mentioned, he wouldn't offer the info if mom didn't request clarification. Drake is supposed to come assess her today and see if they think she can do 3 or more hours of therapy a day. We shall see.... Quote Link to comment Share on other sites More sharing options...
bunny Posted March 21, 2006 Share Posted March 21, 2006 go with what your mom wants. if she acedes to you SF to avoid a fight, let her know the offer is always there. sorry you have to deal with all this crap. xoxo bunny Quote Link to comment Share on other sites More sharing options...
karen335 Posted March 21, 2006 Share Posted March 21, 2006 So what are the treatments for your mom, so she can get better? Chemo, radiation, more surgery, watch and wait, more testing. Hope the doctor's get a game plan going so mom can get better en not have to deal with a saga. She has more important things to do, like getting well and fighting this disease, not family and doctors. Don't mean to sound cold. Just concerned and interested in her next treatments and pray they work for her. Bickering doesn't help mom, it just keeps everyone on the defense and BP up. Let's get constructive and put our heads together and decide what is good for mom and what's not. Time is wasting away. Sandy is sitting in her bed waiting on someone to help her move on with treatment. I have NOT seen ANYONE on this thread offer a suggestion on treatment, including myself. There is NOT enough information to be able to help or even make suggestions. All I know is, I am NOT a soap opera fan. That being said, I close my comment. I guess I am too out spoken. I just tell it like it is , no punches pulled or no intent to hurt anyone's feelings. I am still alive, because of the valuable information I used to be able to find here, from experiences and treatments form others. It does not exist here any more. So sad !!!! Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted March 21, 2006 Author Share Posted March 21, 2006 I personally am finding that mom's treatment is considered experimental as far the general medical population is concerned and so there is very limited info. The current rehab Dr., when asked how she thinks mom is doing replied "Well, your mom is a very amazing woman and her positive attitude is wonderful. I think it is amazing what modern medicine can do." I mean I cannot even find any resources online that reference brachtytherapy treatment after WBR and SRS. Karen, you and my mom are the only two people that I know of (and you DID NOT have WBR). I also know that my mom is so immobile that he can't roll in bed, cut her own food or even wipe her own butt. People do not recognize her and curently she is so swollen, her foot is literally round. Maybe in years from now this treatment will improve peoples' lives, but for now I am just don't see it. Sorry to seem so negative Karen, but I am just plain frustrated. Where is the info? Quote Link to comment Share on other sites More sharing options...
karen335 Posted March 21, 2006 Share Posted March 21, 2006 http://www.mayoclinic.org/brachytherapy/ http://www.gliasite.com/glia_internalrad.asp Not negative. Just so frustrating because your not getting any answers. Doctors not responding or giving any answers. Have you asked about why her foot is so swollen, prop it up on a pillow, I wish I had answers to help you. Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted March 21, 2006 Author Share Posted March 21, 2006 Mom had the permanent seeds implanted, which are used more with prostrate cancer. They are I-25 seeds. She has had her legs propped for months, she wear some pretty darn expensive hose and now has started 20mg of lasix this week. her best friend Hazel thinks she should be on more lasix, maybe 80mg or so. Mom has also sarted having light headaches this week. Currently, while the insurance dicks around on whether they are approving any more rehab, mom is NOT ALLOWED to go to therapy. The aides got her up and dressed Monday morning, only to be refused at the therapy room door. Her neurosurgeon is involoved now, but still no resolve as of today. Quote Link to comment Share on other sites More sharing options...
Mskim Posted March 22, 2006 Share Posted March 22, 2006 Lori... I wish I had something profound to say, I will just continue to keep you and your mom in my prayers. Kim Quote Link to comment Share on other sites More sharing options...
Linda661 Posted March 22, 2006 Share Posted March 22, 2006 Oh Lori, I wish I had something of substance to add here....everyone has done an excellent job of saying all the things I would say, from the docs (and their documented positive statements) are your best help on an insurance appeal....to getting you named as power of attorney if possible with your mom 'cause, no, you are not butting in....what your mom wants is soooooo important here (I don't know squat about the SF banter, but it doesn't sound good so far) and thank goodness you have a home and a significant other/hubby that will support that....... You and your mom are in my thoughts/prayers constantly since I joined here and have watched and responded to your trials.... Do keep us posted as you can.....you and your mom are special to me in my heart since I joined, for some reason I just can't explain. Hugs, Linda Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted March 22, 2006 Author Share Posted March 22, 2006 Thanks for caring so much. Her cancer seems so different from everyone else... Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.