still today 9/29/10

We went to the oncologists office today and talked with the person working with our insurance company. I was very willing to get involved and make calls to get things moving for Marie's treatment, but she asked to let her try again today before I got involved. She called ma a few hours later and let me know that everything had been approved for Marie's medication. That was great news. Now we wait for the pharmacy to call us to let us know how to get the medication. More waiting but we're moving down the path.

today 9/28/10

Today makes four weeks since the last MRI. The medicals want to change the treatment but so far nothing. I know they've been working on it but there must be some hang up. I'm going to get involved and find out what the problem is and see if I can move things along.

over nine years of history

Taking Marie to daycare was only part of what needed to be done. She needed to get started back on chemotherapy. I wasn't going to take her back to the last oncologist so I needed to find a new one. And I needed to do it quickly. What I did was call our family doctor and asked what oncologist I should take Marie to. They gave me a name and I called. They agreed to an appointment but we needed to get Marie's history to them so they could review what has been going on. And that's what I did. Over nine years of brain tumor history was sent to the new oncologist office.

sneaky

The first week of taking Marie to the daycare went pretty well. I would take her in the morning, she wouldn't want to stay, but when I came to pick her up at the end of the day she seemed fine. Actually she didn't have any memory of the morning when I brought her there. If she was mad at me for leaving her there, she didn't remember at night. I began to count on that loss of memory. It felt sneaky and I didn't like it, even though it was necessary.

getting ready

Getting Marie ready each day for daycare was not easy. She couldn't get her own breakfast, needed help getting cleaned up, and couldn't dress on her own. Getting out the door on time seemed like a miracle everyday. But it was worth it. Marie was home with us and I didn't have to worry about her when I went to work.

going to the daycare

Taking Marie to the adult daycare was tough. We had to be there by 7:00 am, so we needed to get up pretty early. It definitely brought back memories of getting the kids to school. But when the person going to daycare was an adult, and they didn't want to go, it was even worse. The first time I took her was emotional. When we got there, they took Marie's coat and had me take her into the room with the other early morning arrivals. We sat down together in front of the television and I stayed for a few minutes. When I told Marie that I had to go she became upset and didn't want to stay. She wanted to go home. One of the nuns told me to leave and not to worry. She said Marie would be okay. That's what I did, but I felt awful.

back to the story

Let's get back to the story right now. Okay Marie was very weak and confused. Her memory was very poor. She was still on steroids, but I didn't know why. I needed to go to work, so she had to go to an adult daycare. The daycare agreed to take her as long as she could use the bathroom on her own. I was afraid she would sit down and not have the strength to stand up when she was finished. We just didn't have a choice. The cost to keep her home was was beyond our means. There is no help available if you can't pay for it. None. No government agency exists, that I could find, to help at all.

yes still more today

It's been three and a half weeks since the MRI and Marie hasn't started treatment yet. There apparently is a lot of paperwork that has to be done to get this acne medication. I guess it's very powerful and tightly controlled. Unfortunately that means the tumors are growing and growing while we wait.

still more

More than just trial and error, the doctors continue to try treatments based on what history they can find of a treatment that has had a positive effect. And that's what led to this newest proposed treatment. Acne medication. Yes that's right acne medication. The doctor told me that there is a medication that's being used for severe acne, that has been found to have positive effects on some brain tumors. They believe that this should be the next medication used, so we are moving forward with this treatment.

yes, still today

According to the doctors this tumor has more preferred ways of treatment. But when those ways are used, over and over, and it still recurs, then other ways of treatment need to be tried. That's how chemotherapy was used on Marie. Not a more preferred way of treatment for this type of tumor, but the option of surgery and radiation have appeared to run out. The chemotherapy has has some positive results and then the tumor reverses itself and starts to grow again. My hope is that the doctors will get the right kind or combination of chemotherapeutic drugs to finally stop this tumor. It's like they're so close, getting some positive reactions, and then just miss.

still today

The doctors worked on this for two weeks before we were contacted with the new plan of attack. They always remind me of how rare this tumor is and how even more rare it is to have recurred so often. I know they are not making excuses, they are telling me the truth. This particular tumor or disease doesn't come with an owners manual.

back to today

It's time to start talking about what's been going on lately. The last MRI showed significant tumor growth from the one taken two months earlier. Certainly it was a disappointment since there had been improvement with the current treatment, and now it seems to have reversed itself. Chemotherapy was stopped while the doctors discussed what was going on and how to proceed. Marie took this all in stride.

a wheelchair

The first time I took Marie for rehabilitation it was quite a walk from the parking lot, into the building, over to the elevator, up a few floors, then down a hallway to the speech therapy room. After her therapy session we walked back down the hallway to the elevator, but before we went down she decided she needed to use the restroom. Marie went in, and even came back out okay, but that was as far as she could go. She leaned on that wall next to the elevator and slid straight down until she was on the floor. Her legs had given out. No strength left at all. I tried to help her up but there was no way she could stand. I had to go back to the therapy room and get help. They called for and then a few of us got on either side of Marie and pulled her up. She was like dead weight. We put her in the wheel chair and took her to the car. By the time we got to the car she had enough strength to get off of the chair and swing into the car seat.

weak and confused

I wanted to describe what I mean by weak and confused for Marie. She had little strength in her legs. If Marie was sitting in a chair, she would not be able to stand up. I know she was very weak, but I also think she had a problem of remembering how to stand up. I have no way to know how much of that was lack of strength, or lack of memory. She could walk, but not too far. Walking from the car to a building was one thing, but navigating throughout the building, to get to a doctor's office was another thing. A wheel chair would be necessary.

still review

After all this time in the hospital while taking steroids, Marie was left weak, confused, and needing rehabilitation just so she could restart the most current brain tumor recurrence. after all that the social workers came in with the option of placing Marie in a nursing home. And my brilliant solution was take Marie home and place her in adult daycare with people much older than herself.

review

Let's just review the hospital stay. On September 11, 2009 Marie was admitted to the hospital because an infection was discovered in her spinal fluid. On her first night, I had to make the call on whether to revive if the medicals could not bring her back to a life quality level. Marie's spinal fluid leak finally revealed itself to the medicals, causing her to undergo a lumbar puncture to drain off spinal fluid. This resulted to air filling Marie's head and creating another dangerous situation. Our daughter witnessed her mom have a code blue emergency only to overhear a medical say she loved when this happens, it's so exciting. The doctor removed the omayan reservoir and attempted a number of times to stop the spinal fluid leak. A plastic surgeon was finally called in to surgical repair the leak.

a pretty large amount

What I needed to do was find an adult day care that was affordable, nearby, and had space available right away. The prices were all similar and that facilities were all pretty comparable. I was able to find a place that was on my way to work. What I needed was three days a week from 7:00 am to 5:30 pm. The other four days Marie would stay home with our daughter or me. Each day at the adult daycare would cost $45, so a month expense would be $540. That's a pretty large amount when you are living on one paycheck and the small amount of social security that Marie was receiving.

no choice

Driving her home that night I was sure I had done the right thing. Well I was pretty sure. No, I'm sure that I was sure. I think. Marie had a lot of memory and cognizant issues. Besides that, she was very weak. If I remember right, she was in the hospital 32 day. Her strength was almost gone and she needed help doing most things. Marie would need lot of care and rehabilitation. And I had no choice, I had to go to work.

we have not been back since

The way I felt was that the hospital was so sure that I was going to have Marie placed into a nursing home that they had no plan when I said I would take her home. So, if you want her, come and get her. I did just that. I went to the hospital after work, got her dressed, packed up her things and took her home. I was happy to get her away from that hospital, and .

what is she talking about

To this day I still can't believe the social worker wanted Marie out of the hospital that day. When I question her as to if she was trying to get rid of a patient, she said no, she just wasn't sure if the insurance company would pay for any additional time in the hospital. I had not had any problems with the insurance company up to that point, so I wasn't confident that she knew what she was talking about.

get her now

Finally the day came that I told the social worker that I was taking Marie home. I called the social worker during the day, while I as at work, to tell her. Okay was her response. We will get the paperwork done and you can come right over and get her now. No is what I told the social worker. I was at work and couldn't get there until 5:30 pm. Besides I told her that I still have not been told that the spinal fluid infection was cleared yet. She told me she would check on that and call me back.

not left alone

I made a decision. Not one that was well informed or knowledgeable. I made a decision that just felt right. Marie was going to come home. She wanted to be home and I wanted her there. The medicals were concerned about Marie being left alone. I could drop her off and pick her at at adult day care each day that I worked. I would make her rehabilitation appointments on my day off. Marie would not be left alone. Leaving her in a nursing home with mature residents many years her senior, in my opinion, would have been leaving her alone.

long term consequences

The last thing that I think I understand about medicaid is that each state has the ability to dictate how the medicaid program would work. Does that mean that medicaid could vary from state to state? These programs are hard for me to understand and the the qualification are difficult to navigate. I know That I needed an expert to help me decide what to do but I just didn't feel like I had anyone that could explain to me all the options and the possible long term consequences. The social worker was pushing for a decision, any decision. And she wanted it soon.

affordable medicaid or not

Your entire income would be taken into account and medicaid would make a decision how much of that income should be allocated to the partner receiving medicaid benefits. So if they decided that Marie should receive 40% of the income then her medicaid benefit would be reduced by that amount of money and you would be required to pay for those costs. If that was the case we wouldn't be able to afford medicaid.

spousal medicaid

The social worker called me again to find out if I had all the information that I needed on the available nursing homes. I wanted to know what would happen after ninety days when my insurance coverage would run out. She told me that we could always file for medicaid. The way I understand it my state allows us to file for spousal medicaid. I'm am not that knowledgeable on this subject but the way I think I understand it is, the partner that needs medicaid would receive it.

adult day care

One of the calls I made led me to the idea of enrolling Marie into adult day care. Instead of a nursing home. I checked into a few option. Some only would take people 55 years or older. Their idea of adult care was actually senior care. Other places were open to age, but cautioned that the average age was well into the seventies. What was our choice, a nursing home or adult day care. I wanted her home so the decision was easy to make. And the cost for a month was the same as in-home care for a week. Now I needed to pick a place that could take her quickly.

time to make a decision

The social worker got back to me with the nursing home facilities that had available space and offered rehab. It was my job to pick one out. I asked the same questions to this social worker that I asked the last one, but I still got the same no answer responses. They had no intention of giving me any recommendations or direction. The hospital was done with this patient and wanted her to move on. I came out and asked if they were trying to push Marie out and she assured me that wasn't the case. But the insurance would only cover for so long. It was time to make a decision.

$200

That organization has the right to dole out money as they see fit. I didn't agree with their policy but I was happy that there was some help for some brain tumor patients. What floored me the most was when he told me that that amount of money available for co-pay relief was small. If we would have been approved it would only have been for about $200.

I've have wondered since then if the monies were denied for benign brain tumors because they could last longer and cost so much more. Marie had three brain surgeries, four stereotatic radiations, and two different types of chemotherapy treatments up to that point, all with no end in sight.

malignant vs benign

I was some what dumb founded by the response that co-pay funding is reserved for malignant brain tumors only. Arguing was to no avail, but I tried anyway. He explained that malignant tumors grow so quickly that the patient may not have time to make financial decisions and needs help right away. Honestly that was an excellent point and one that I respected. But with that said I felt I needed to present Marie's side. I told him how Marie has had recurring tumors for nine years by that time. Financial decisions were long since past. The money was gone.

tumor type

We had earlier filled out a form for co-pay relief that was provided by a social worker. I received a letter in the mail from this organization which stated that I needed to call in order to complete the process. When I called and was connected I was told the the application was denied. I explained that the letter said I should call to complete the process. That's what were doing now, was the response.

The reason it was denied was because of the tumor type. Marie had a grade II central neurocytoma which is considered benign. That organization wold only support malignant tumors.

it's worth a try

Armed with all my numbers I started making calls. I called the United way and they gave me telephone numbers of some possible options. One of those numbers led to more phone numbers and so on. I kept getting more numbers to call, but no help. Most of the calls went something like this.

I'm looking help to pay for my wife's doctor co-pays. She will be getting chemotherapy and we can't afford all the co-pays. Oh, I'm sorry we don't actually pay for anything. We just offer support. Or, I'm looking for in-home care for my wife so I can go to work during the day. Can you provide the service or funding to help pay for it? No, but why don't you try this other organization. I don't know if they can help you, but .

largest financial obligations

The social worker was busy looking into available nursing home facilities and I got busy making phone calls. My mission was to find financial support, to pay for the in-home care. I believed the last option was to place Marie in a nursing home, not the first.

I started with the internet to find organizations or charities that might help. Mt goal was to obtain in-home care and co-pay relief. Those would figure to be the largest financial obligations. I also got a list of possibilities from the social worker. Marie needed to have rehabilitation and start back on chemotherapy.

government program

I must have been crazy. Why would I expect the insurance company to pay for Marie's care. I believed that it was the care she needed, but it wasn't medical care. I guess if she got hurt then they would have payed to have the medicals take care of her. I thought of it as preventative care. But it looked more like babysitting. At $18.00 an hour.

This was one of those situations where it seems that everyone knows better than you. And they all have stories about how they know that this one, or that one, that got in-home service. Most of the time when I got to the bottom of the story, it tuned out the person was getting nursing care. Other times it was a supposed government program that payed. But no one could ever give me the name of that program.

three days a week

The internet has many in home care agencies to chose from. It was easy to get telephone numbers. In most cases someone would answer the telephone, take the message, and then have someone else call me back. Marie didn't need any nursing care, just someone to keep an eye on her. The average price for that service appeared to me to be about $18.00 per hour. If I needed to get someone three days a week, for 10 hours a day, then the cost, each week, would be $540. While that's a lot of money, I was sure a nursing home would cost more. It just never dawned on me that the insurance company wouldn't pay for it.

in home care

I told this new social worker that I wanted Marie to come home and that I would take her to rehabilitation as an out patient. I was afraid Marie would get into a nursing home and not get out. Of course the social worker explained that the concern for Marie was that she might get hurt if no one was there to watch her. My thought was, no problem, let's just get in-home care.

get me information

When the new social worker contacted me I could tell she was both more experienced and professional than the last one. Although I wasn't sure I was going to get any more information with this person. She definitely wanted to take charge of this situation and move me to decision making. I asked her to get me the information of what nursing homes actually had space and provided rehabilitation services. I didn't see any reason to be checking out places that may not have room for Marie anyway. Still I was wary of placing Marie in a nursing home so I asked to have an acute rehab center check out Marie to see if she would qualify for that. The social worker agreed.

fresh start

I called the social workers supervisor and was granted a new person to work with. The supervisor told me that the new social; worker would be contacting me shortly. There was no complaining about the last social worker or that lack of help. I was hoping a fresh start with a new social worker could work.

that was that

When the social worker started giving me one word answers and just kept repeating the same statement over and over, I knew the meeting was over. I ended the session and asked how I could get a different social worker to talk to. She gave me her supervisors name and telephone number, and that was the end of that.

unwilling or unable

I wanted Marie to come home. As long as the infection is cleared up, there is no medical reason to keep her in the hospital. At this point though, I still didn't know if the infection was cured. The social worker wanted me to make a decision quickly. I didn't like that the social worker approached me and wanted to move Marie so quickly. I felt that she should have come to me with enough time so that I could understand the process, and what insurance coverage Marie was entitled to. I needed help and the social worker was to give me that help.

medicaid

I decided to change the direction of the conversation and asked about insurance coverage. She explained that my insurance would cover for ninety days. When I inquired about what would happen after the ninety days, she said we could file for medicaid. Even though the medicals were trying to sell me on the fact that Marie should only need a few weeks of care, to help her get back on her feet, I didn't believe that was possible. I didn't want Marie to be pushed into the system with no way out. It really felt to me that Marie was about to be institutionalized.

refused recommendations

My meeting with the social worker started bad and got worse. She wanted to know if I had picked out any nursing homes and I wanted to know if she help me decide based on what type of care Marie would need. She refused to give any recommendations or information at all and I continued to express that didn't know how to pick a place. This was going no where and both sides were getting frustrated. we needed to work together but we were putting up walls.

slow it down

What was coming across to me was that Marie would be getting a few hours of therapy each week, so why a nursing home. I wanted her home. This whole thing seemed to be steam rolling. Must find a place, must find a place. I decided to slow everything down, so I could understand all the options. That week I called a meeting with the social worker to discuss the possibility of Marie coming home and doing rehab as an out patient.

I wanted to know what the insurance coverage would be, and if it didn't work out would I still be able to admit Marie to a nursing home.

no information

The social worker was supposed to help me find a place for Marie. She did this by supplying me with brochures. I asked for some guidance but didn't get any. The social workers, apparently, are not allowed to offer suggestions or give you any information that may influence your choice. She told me that I could arrange for tours of the facilities, or ask family and friends for their input. But she in no way could offer me any recommendations. All she could do for me was wait until I picked out some of the facilities. Then she could check for space availability and help me understand what the insurance coverage would be.

This whole process just didn't seem right to me.

she needed care

Over the course of a week, I met with therapist that had been seeing Marie for speech, physical, and occupational therapies. The consensus was coming back that Marie would need to be transferred to a place where she could get more intense therapy to help her prepare for a return to home. The doctors all agreed with this assessment and felt it would be for a few weeks.

What they were talking about was admitting Marie to a nursing home. Once the spinal fluid infection was cleared up there would be no reason to keep her in the hospital. But she wasn't ready to go home. Marie was weak, confused, and needed help doing many daily things. She needed care, but not medical care.

today 9/2/10

We're waiting for a call from the oncologist. He wanted to discuss the results of the latest chemotherapy. So here we are in the waiting mode again. it's just something you never get used to. Instead of worrying about it we decided to go out and have a nice day. We had a lot of fun and that's really all it's about. Isn't it?

today 9/1/10

Today Marie had her MRI and we met with the oncologist. I really don't feel like talking about it right now, and I'm forcing myself to write. We'll talk about the results at a later time.