A downer of a day..

[mamasbabygirl]

Well, looks like the insurance has made it's final ruling by now deying our appeal twice. I spoke with KY Office of Insurance to find out that it is the DOL (EBISA) who I should be calling. I did and found out that bc the insurance plan is self-funded, they call the shots. There is no federal law otherwise. The insurance can make any decisions they want and our only next step is a civil lawsuit.

I spoke with about seven cancer agencies and after I told mom's story, each and every one of them asked why hospice is not involved. I explained that her neurosurgeon (and he is the only one) told her that her prognosis is "good" and told us average life expectancy was one year after her last surgery. They all seemed very suspicious.

I did not work today to go be with mom and basically walked in on her YELLING AT THE TOP OF HER LUNGS how she "hates this place, it is generic!"

Her new room has no TV (John and I brought one Saturday night which is working just fine) and her bed does not allow her to change her position herself (it is not electric). I mean, she has movement in only her right arm and neck, so that was about her only freedom. Now, she must ring the call light and wait to even sit up. The wait is on average 10 minutes, no kidding.

Mom was up and dressed for therapy, but we were once again refused at the door. We both starting balling our eyes out and begged the social worker to help us, but she said it is out of their hands.

I am so angry today bc all of the cancer organiztions talk about keeping the hope and my mom has it, along with willpower to live beyond anyone I have ever seen and everyone and everything else is pushing her to hospice. How sickening is this? I am ready to throw in the towel myself today. This is a very very very very poor quality of life.

Meanwhile SF got his first month's bill for May and it is $11,300.00.

We found out we will close on our house on June 16th and I got an eye roll and walk away from SF. He is so grateful.

I am soooooooooooooo depressed and just really don't feel like I can continue fighting the system. I am being forced to let them back mom into death's corner.

[Nancy B]

Lori, I am so sorry to hear all of this. It just isn't right. I don't have any suggestions for you, but bless your heart for fighting so hard for your Mom. I am praying for both of you.

Hugs,

Nancy B

[RandyW]

I am at a Loss for words right now because I am so upset at what Your Ins. Company is doing to you and your family and Mom of course. I perssonally do not know where to start becuase I haven't been in this situation. I thought about patient advocates and this may help you; i do not know though but here is a link for anadvocates group I believe is free of charge you may want to check it out.

http://www.thefamilycaregiver.org/index.cfm

Another good Link is this one lots of advice I think

http://www.lungcanceronline.org/support/financial.html

Wishing you good luck and will say extra prayer tonite for mom and her family. I hope this helps some.

[stand4hope]

Listen, Lori, if you can't beat the system, then you just have to work with what is there. The situation you describe with your mom is exactly what I had with my dad in the nursing home - we had to get the TV, no electric bed, he couldn't move, etc., etc. It was hot and we had to buy a fan. He eventually had to be fed, which they did, but not until they could get to it, so sometimes his food was cold. He was totally bedridden and on a ventilator for the months he was there. Also, he would have been happy to have had a 10 minute response. Many times he had to wet himself (and do other things) because all the aids and nurses were tied up with other patients. It was sad, it was bad at times, but I KNOW that at least where he was, they were absolutely doing the best they could with the resources they had. I had as much empathy for the staff as I did for my dad. They were literally worked to the bone.

That's just the way it is. I know it costs a lot of money and for that kind of money, you would think it would be like a hotel suite with aids all around - but it isn't. It's not a lot different in most hospitals, either. There is a terrible shortage of nurses and aids, and some places, of course, get lazy nurses and aids, just like we all have lazy people that work in our offices and on our jobs.

That being said, I'm going to be blunt and just say you have to hold your head up, go with what you've got, fix what you can fix, and you just have to let the rest of it go. If you don't, you are going to be the one in a hospital. That's all you can do. Just work with the system that's there.

On the therapy, if you can find the time, or someone else in your family can, or a friend, you can do some therapy with her yourself - IF she will let you. If you don't know what things to do, ask them if you can go in the therapy room and watch. If not, I'm sure there are books, internet or other resources that will give you ideas.

I just don't know what else to say, but I can tell you are on the edge and that isn't going to help anybody. Step back a bit, take lots of deep breaths, if you are a praying person ask God to help you cope, and ask everyone available in your network of family and friends to help you, too.

The system, health insurance, and health care are far from perfect, but it's a lot better than they have in other countries. We can continue to lobby for change, work for change, vote, speak up, shout, but until changes are made, it just is what it is. I know it stinks, but it still is what it is.

Hang in there, Lori! You can do this!

Love,

Peggy

[Bill]

IMO late stage cancer carries it's own stigma and tx decisions can be cold and cruel as it boils down to allocating dollars vs. prognosis. My wife just received authorization for some very expensive heroic tx with an unknown amount of SNF / nursing care to follow. The criteria that she had to meet in order to qualify was as follows :

" Extremely serious, urgent or emergent medical condition typically requiring complicated intervention and with a high potential for dire outcome if treatment requested is disallowed ... "

Never thought that it would be beneficial for her to be so sick. And, this isn't the first time that this criteria has been required.

B

[ma's kid]

Oh, Lori! I just don't know what to say. I am so sorry.

Saying prayers.

Libby

[Linda661]

Lori:

This, well, sucks big time (why mince words here).... enough is enough ..... the only one on the insurance thing now is your state insurance commissioner....they govern what those private insurance agencies are doing.....worst case, you've got the kind of monthly bills you quoted...best case, the state can do something about it....the state can file the lawsuit issue, you don't have to....I hate this probably as much as you do as I am in it to my degree too. Today, I got to assist my mom in a shower, after getting permission at the facility -- not that they weren't doing it, but it is what she wanted NOW when I got there today....it's rough, no doubt about it.

I really don't know what to say more than this for now. If you run into difficulties that you want to talk about in more detail than in public, you are welcome to PM me and I'll try to do what I can. You've got my heart Lori as you have already carried me through so much when I just wanted to give up so far (can't say that's totally done yet, but I am still here aren't I....day by day).

I really hate what this disease process puts us and our loved ones through. My heart just melts every time my mom quivers...I'm sure you are in the same situation.

Linda

[mamasbabygirl]

Linda,

Apparently bc the insurance is out of Ohio (we live in KY) and it is self-funded, the KY Office of Insurance has no governing authority. They referred me to EBISA and they can do nothing.

Peggy,

I hear what you are saying, but it is mom who wants to go to therapy. When I asked my brother specifically if he would do her therapy every day (his major is PT), he looked at SF as if for approval and then said "I don't know." I sat there and looked at him like maybe I had overstepped my grounds. I asked him for something specific and he would not commit. So, he is apparently off limits when it comes to helping. I wipe her *ss and SF pays the bills.

[Don M]

Lori: Apparently you have exhausted all your options..I think the State of Washington would be more aggressive in helping the consumer.. but I don't know.

I have no advice except to say that Peggy's advice seems good. If I were in your position I probably would not have the energy or resources to wage a legal battle.

You and your mom have my prayers.

Hmmm Actually, it looks like to me that the KY Office of Insurance gave you a bum steer. The Department of Labor handles workman's compensation. The KY Office of Insurance is the one that has oversight over private insurers. I don't know why they would send you to DOL. If you still have some energy left, go back and demand that they (KY Office of Insurance) do an investigation.

I went to their website and you can file a complaint on line:

http://doi.ppr.ky.gov/Kentucky/

Don M

[ztweb]

Urgh!!! You must be so frustrated. What is SF? Your brother is thinking of not helping? I know I am new here, but I don't get it! I will say prayers for you!

[Snowflake]

Look, Lori, I have an extra pair of clean big girl panties, slip 'em on.

So your little brother has the knowledge and won't use it. What a rotten little brat. Bet there's books out there with direction on how to work muscle groups and where to start slow and build for a massage.

Walk Mom up and down the hall, help her swing her legs over the edge of the bed. Massage what's sore, read up on technique - and to hell with all those men in the family. She wants out of there and YOU seem to be the only one interested in springing her.

Big girl panties, Lori. Mama needs you, step up to the plate. Let your SF worry about the money to pay that freakin' bill. If he can't help out with the actual CARE (and I mean HIM giving a rat's *ss), then HE can figure out how to get the insurance machine going in the right direction. Hand that problem right back in his lap. Make due with what you have and work on getting your mother into a more healing environment, emotionally as well as physically.

...and slap your brother for me. No, wait, KY isn't THAT far from me, I'll come down there and slap him myself! I'll wear Mark's steel-toed boots and have a discussion with your SF, as well. (My big girl panties are SuperGirl underoos, I have She-Hulk for you!)

I know, you're pulling your hair out - new bumper sticker "Bald - it's not just from chemo anymore!"

Hang in there, and keep watching out for your mom, but DON'T lose your perspective. Yeah, I'd be p*ssed, too, with the insurance issues - but hey, on the bright side, it ain't YOUR name on the bill!

Take care,

Becky

(With her Irish WAYYYYY up!)

[Treebywater]

Oh Lori... I just wish I could come hug you. I'm so sorry it was such a rotten day. I just HATE this stuff.

[karen335]

Lori,

I know nothing about the insurance. The brother, is he your real brother, 1/2 brother or step brother. I think we're all thinking he is a real bro and not of your SF. If he really cares, he should help with your mom's PT. This situation with the SF and bro sounds fishy to me...

Sending you prayers and hugs,

Karen

[mamasbabygirl]

My brother is my half brother, of my mom and SF. SF packs his lunch to go to college. Pretty funny, huh?

I usually spend my time there getting her clean, less raw, changing her bed, cleaning her hands and nails. You know, personal care stuff. If you count on them to do it, well you end up with kaka in your tata for hours on end.

John (my better half these days) told me to get off of the therapy thing and focus on her moving in with us in 6 weeks. At least we can have meals together again.

I told SF when she had to go to the nursing home that my fear was that this would become her only option and dontcha know it, that's where we are.

When I told SF yesterday that we will probably need a nurse most days when he moves with us and that it may end up being about the same cost as the nursing home, he said "well then she can just stay there." I said "No, she doesn't want to" to which he relied "then you be responsible for her!" You guys told me it was going here and it did.

6 weeks and counting down...

[Linda661]

Lori:

I think Don is right, that KY DOI steered you wrong. The only reason I can think of that they might have told you they do not have governing authority is because the insurance agency is in Ohio (as you said) -- then Ohio DOI should be able to deal with it. I would expect, however, that KY would be able to provide some advocacy help there though. (yeah, well, I expect alot of things should be helpful and they are not out there in the world!). We also never considered that the HR office where SF works might know another route for complaint on that insurer since they have contracted with them.

Becky Snowflake made a really good point too: you know, if SF is really paying all of the bills, let him figure out the insurance stuff and save your energy for your mom. Or, do you have a fear running that he just might plain refuse to bring in the help she needs????

Re therapy: at one point before her fall, my mom was refused therapy as well because of insurance. What mom did was get instruction on what exercises she could do on her own to keep working toward her goals. I know your mom can't really do that at the moment -- when this happened with my dad, both he and I were taught what to do for therapy and then I helped him do it. Haven't found any therapy staff yet that won't help a patient and a family in that way. I'm so sorry that your therapy-trained brother is being such a jerk too.

Keep us posted and keep counting those weeks down on the house.

Linda

[SBeth]

Lori,

As difficult as it may be to do; maybe you should put a call into Hospice and atleast have a conversation with them about what services they can/will offer for your Mom. If we are talking about her quality of life and you don't think she is getting it from the nursing home, maybe Hospice can help. When Bill signed on with Hospice of Cincinati I asked the administrator what happens if a year goes by and he is still alive and they informed us that if he remained stable after six months, Hospice would sign him back under the care of his physician with the option to return to Hospice when his cancer began progressing again.

I know it is a hard thing to accept, but maybe it's time to atleast look into what that option looks like.

My best to you and I'm still just across the bridge if you need anything!

Love,

[Lyn]

Lori, are there any other nursing homes in your area you could check into and see if there care is better? My father is in a Nursing Home in New York State and he is very well taken care of. My mother was also cared for in this facility very well, much better than in the hospital. Sounds like you have her in a poor place. Nursing homes are all a little different and you really have to check them out. There are some good ones out there, though (at least around here). I thank God I had those nurses to take care of my Mom when she was sick. They were very caring and wonderful to her and to me. I'm sorry you are going through this. It is hard enough without the added stress. But the staff there should be cleaning her, changing her bed, feeding her, etc. That's what they are getting the big bucks for. Maybe you should report them to the state board that licenses them.

[nikkala]

I am so sorry Lori that just trying to keep your mom alive has to be such a battle. Maybe you could get some library books on phys therapy and try to do some of it yourselves. You can incorporate it into bathing and dressing and stuff and maybe give mom some stuff she can do on her own. I just wish I could say something to make it better. Sending big hugs ((((((LORI))))))

[cindy0519]

Lori,

If you are still searching this may be worth looking into....Hill-Burton assistance. Hill-Burton is a program through which hospitals receive construction funds from the Federal Government. Hospitals that receive Hill-Burton funds are required by law to provide some services to people who cannot afford to pay for their hospitalization. These services vary by facility and offered either free or at a reduced fee based on income.

I looked at some information on the available facilities and found a rehabilitation facility in Ft. Mitchell KY. Here is what I found:

REDWOOD SCH REHAB CTR

71 ORPHANAGE ROAD

FORT MITCHELL 41017

859-331-0880

You can find some more information at this website [/url] http://www.hrsa.gov/hillburton/default.htm [/url]. This website also has a list of the available facilies in each state. You can also call this toll free number (800)638–0742.

I'm not sure if this will be helpful or not, but it might be worth a look and a phone call.

Praying that you find a solution and your Mom is able to get the help that she needs.

[mamasbabygirl]

Thanks for the info Cindi. We used to live across the street from that place when I was a teenager and I only saw kids there, it is affiliatd with an orphanage that adjoins.

Becky,

I so wish my mom was able to walk even if with a walker. Her current ability is that she can still move her right arm and turn her head. That is it. She has no strength to even be able to help us pull her out of the wheelchair and when we took her out, it took John and giving everything we have to pull her out of the chair, move the chair and then using our strength to lift her into the van. I guess essentially she is bedridden, but we force the issue and pretend she is not. She can use her right arm to hold onto the bedrail while I roll her over and even that is a struggle.

When we do get an aide at my house, she better be one muscular woman!

Beth,

I still have not called hospice, bc of mom's state of mind. Doesn't she have to sign a paper indicating she won't take any more treatment? Well, if a Dr. walked into her room today and said he had a new treatment that could help her mobility, she'd sign up in a heartbeat. I mean, wouldn't you? Her cancer is stable and her main problem is that her body is all but frozen alive. She needs professional therapy if there is any hope of her having one ounce of independence. We talk about getting an electric scooter once at my house. It would require that we can lift her onto it and tying her into it so she wouldn't fall out. We would have to tie down her left arm and leg so that it didn't flop off.

I don't know. John suggests we stop trying to push the therapy thing and talk to her about comfort and spending time together, but she still wants to go back to work.

I just wanted you guys to understand her physical state. I soooooooooo appreciate everyone trying to help. I really do.

[adela]

Lori,

What a tough situation. I was in a similar situation with my husband I and my son were taking care of my husband. His son was not doing anything but critizing me. It was quite painful.

Whatever your gut tells you to do.......do it within reasonable parameters. That way you have done everything possible for your mother. If you have to step on family toes do it. What counts is your mother......

Please take very good care of yourself.This journey you are on is tough.

[Linda661]

Lori:

You and your family need to be careful that you do not injure yourselves moving your mom that way. My dad's mobility was the same as your mom's (and worse eventually) and it took therapy folks to teach me how to maneuver with him so I wouldn't get injured -- there are pieces of equipment and other "assists" that the home help organization should be able to bring in that make that kind of patient transfer safe for both patient and caregiver -- the equipment used varies, depending on what the patient can do. You probably have run across that kind of thing being used at the nursing facility. Has the doctor said anything about your mom's ability to regain her mobility? It may help determine how much assistance from family, professionals, etc. that you will need at home; some safe transfers probably require at least two people to be there to do when needed, sometimes three (depends on individual circumstance).

Hugs,

Linda

[KarHart]

Lori, I think you should contact hospice too. My understanding is you must no longer be getting treatment for the disease. However, you can get quallity of life treatment. I would think physical therapy would fall under that category. For instance, hospice arranged for Ken to get 2 liters of blood in the hopes that it would pep him up. When you bring your mother home they can arrange for equipment to be brought in that can help with her mobility issues. It can't hurt just to talk to them, you can sign out at any time if she goes back to getting treatment for her cancer. You may have more than one hospice in your area so I would check with all of them to see what they can offer. Hope you find some answers soon, this must be so stressfull.

[Treebywater]

Still thinking about you and praying Lori. Praying for what's best for your Mama, and for wisdom for you.

[trish2418]

My prayers are with you and your mom. Sure wish things were better for your mom at this stage. Sometimes the bureaucracies are as bad as the disease.

Trish