I kept calling the insurance company. Last Thursday, I called and actually talked to the Care Manager. I asked about the status of the claim. She told me that Dr. Thompson’s office still had not returned the information. I informed her that that was false. I knew for a fact that they had and had even attempted to get verification of what had been faxed to the insurance company and were told that receipt of the fax could not be guaranteed for 24-72 hours. Do not lie to me! Again! OMG. I told her to look again. She said that it did look like they had returned the information (Gee. Ya think?) and she was unsure of why eligibility had not been determined. I said that she didn’t seem to have much relevant information for me. I exasperated her to the point where she gave me the phone number to the claim department. Now we are getting somewhere. I called them and left a message.
I called the claim department yesterday and was told that Barry was determined to be eligible and that we should have gotten a call from the Care Manager informing us of that. I said that we had not received any such call and that I had been calling and inquiring for weeks. The claims person said that there was no such record of me calling repeatedly. I informed her that their records were inadequate. She said that a letter was sent out on Thursday the 23rd.
Today I got the call from the Care Manager saying Barry had been approved and got some instruction on what I will need to do to get the ball rolling. Yea.
I feel like I am at the Oscars, receiving a trophy, and realizing that I have received zero support and assistance. I would like to thank me, myself, and I. I did this. Alone. Unless you count the spiritual assistance I (literally) conjured up to bind the insurance company. I have thanked them. I believe in giving credit where credit is due and in not giving credit where it is not due. I believe it was my calling repeatedly and asking for information from the insurance company and the lawyer calling them and me going to the doctors’ office and calling them repeatedly that have achieved this. They did not do this out of the goodness of their cold, little, shriveled hearts.
The idea that the rest of my life is going to be like this is exhausting. Everyone has always given me the impression that life has its own momentum. I have absolutely never found that to be the case. Bad stuff happens spontaneously. Good stuff requires a ridiculous amount of discipline and perseverance to achieve. Nothing good occurs without me making some huge sacrifice of time, energy, and/or money. The cost is often so high that I seriously question whether the sacrifices are worth it. I have had many Pyrrhic victories. Good things happen because I take full 100% responsibility and make them happen. The only exception to this I can think of is when my parents gave me their car. I will be eternally grateful for that.
Anyhow, before I receive any assistance form the insurance company, I have to use 20 days of services before they pay for the 21st and onward. Because I saw a potential legal hassle in front of me, I have been putting off paying for assistance and getting a new routine going. So I have an appointment for an in-home visit scheduled to have the potential provider do an evaluation. One thing at a time.
Barry is not going to like the next phase of things. But it’s not as if I thought he would. Part of me is still disbelieving my own self. After all, I still have yet to receive the letter of eligibility. But he is about to start getting baby-sat. Once I get a schedule going, I can maybe get a weenie part-time job and start looking at beginning (not “re-starting”) a career.
Everything will still revolve around Barry, but not as much as for the past five years. This is the bare-bones beginning of me being able to work. To me, holding down a job is a major commitment and I won’t make a commitment I can’t keep, if I can at all help it. I want to be a real employee, even if not much of one.
On to the next phase.
Talking to a friend (my one that left MI and moved to MD), I knew what I needed to do: get still regarding an issue and just listen, for as long as it takes, until some new insight or information arises to tip the balance one way or the other.
I believe that was Thursday. Friday, I got the results of Barry’s blood tests. The tests were ordered because of the whole process of elimination of possibilities for explaining Barry’s cognitive impairment (as if the Huntington’s was insufficient). At least, that is my understanding. I think four tests were ordered and I got the results of two: the B12 level and the folate level. The B12 was in the mid-500s, smack-dab in the middle of the 200-900 range. The folate level came back as >24. The normal range is 2 to 7.
My problem with “>24” is that it is not an actual measurement or quantity. “Greater than 24” can mean 24.1 or 68.9, or 156.2. It literally has no meaning whatsoever. What it says is, “Our chart only goes up to 24 because so few people have levels that high. This level is literally ‘off the chart.'”
So what does it mean? As far as I can tell, it is likely an indicator of advancing prostate cancer. It would make sense given the blood-in-the-urine incident from two years ago. I could be wrong. If Barry’s B12 was low, it would be a sign of pernicious anemia. So that is not it.
I wanted some new information. I believe I have it now. I emailed the physician’s assistant asking if the test should be redone. It would be nice to have an actual diagnosis, for purposes of me receiving help, but Barry has steadfastly refused to have a biopsy done. Given how painful I have heard they are, I can’t say I blame him.
I now suspect the reason the insurance company is dragging its feet is because they are waiting for Barry to die. I think someone looked at the “aspiration” diagnosis and realized that we are now talking about mid- to late-stage Huntington’s.
I believe things are speeding up and I will need to land on my feet when he passes. The time for diddling around is over.
I hang out with a New-Agey group. They are wonderful. They are everything that many church people claim to be but often aren’t.
I read a lot of books on spirituality and Buddhism, in particular. If forced to choose a religion, I would choose Buddhism.
However, Buddhism sometimes seems as fantasy-based as the Veggie-Tales theology I ran into as a Protestant. The kind of theology that says that evil is simply the absence of good. And some of my New-Agey friends are into “non-duality,” which says that everything is actually one. Non-duality sounds fabulous. My problem with it is that it denies the realities of evil and separation.
The famous people that practice non-duality seem to live in caves and can devote themselves full-time to developing their spirituality. Must be nice. I often wonder what they would done in my position. They have someone picking up their slack in real life, whereas I am the one picking up the slack for Barry.
I have been reading a lot about kundalini energy lately. I believe that it is part of what I am experiencing physically and spiritually lately. The more I read about it, the more I realize how my life is not conducive to fully processing this energy. There are all sorts of physical effects that go with the physical transformation of this energy that would make me completely non-functional. I do not have the option of taking time off from caring for Barry so I can turn into a puddle of spiritual energy or deal with horrific physical symptoms that would render me useless. I’m really hoping to deal with this energy gradually, in a way where I can function like a normal human. I believe this is why the most spiritually advanced people are often men–they have someone taking care of the real world while they go on retreats or become temporary hermits.
Sometimes, I fantasize about what I will do when Barry is gone. I can devote more of my time to spiritual pursuits. Or maybe I will be too busy trying to pay Sallie Mae back.
It’s easy to believe in non-duality—until you find out that you’ve been lied to by the insurance company or had someone almost hit you when they pull in front of you in traffic. Sometimes others do not care about you, at best, or are actively trying to make sure your needs are not met. I will believe in non-duality when your eating lunch fills my stomach with food. Separation is real. This is where concepts like “justice” come into play. It’s funny how the people espousing non-duality are usually at the top of the food chain, asserting their authority in comfort.
I am done being a good, little victim. I will use whatever powers I deem necessary to get my needs met. I am not into trying to create adversarial relationships, but I am also not into pretending that I am not in one even as I am lied to. I’m interested in what works, not what sounds good. It’s part of why I stopped being a Christian. I am empowered, not meek and mild.
Yesterday I went to Barry’s doctor’s office to apologize and thank them for their efforts and efficiency. I explained to them how the insurance company claimed that they (the doctor’s office) were the roadblock to getting benefits by delaying returning the forms to the insurance company. I explained how this triggered rage in me because it was like Barry’s family, who would say, “If you need anything, just call,” and then,when I would actually need something, say, “Well….Now’s not a good time.” When is it a good time to be in crisis and need help with a disabled husband? It’s an asinine statement. When Barry dies, maybe it won’t be a good time to invite them to the funeral. Sheesh.
Anyhoo…The most helpful person (I think of her as the “cat smock lady”) tells the secretary to find the file online with the fax cover sheets of received faxes. She does so and prints out a copy for me. In the place of “Fax Transmittal Date” is 2/10/17, but anyone can type anything there. At the very top of the sheet, not quite covered with Barry’s name, you can clearly see where the fax machine printed the actual date of transmission, 2/22/27! In other words, the person transmitting the fax pre-dated it by almost two weeks! I am ecstatic. It is not my opinion or assumption they are lying to me. It is a fact I can prove.
It’s not very often that you have tangible proof of someone lying to you. I’m not sure there can be a better definition of “bad faith” than that. If they choose not to give me benefits, I am going to get a big-ass settlement. Mine is a career-making case for some lucky attorney. The questions I am pondering now are “Even if they offer me benefits, should I still take their butts to court for all of the people they lie to and don’t provide paid-for benefits to? Do I just get my own needs met (sure would be nice for once) or do I go after justice?” I’m not sure, but I feel in charge for once.
I went into the doctor’s office with Barry angry because the insurance company told me that the doctor’s office hadn’t returned the forms sent in that the insurers had sent them. I was pissed at the wrong people.
The physician’s assistant gave me a timeline of when they had received the forms and the progress filling them out. I shouldn’t be surprised. She told me that they lie to her all the time, saying they sent forms when they haven’t.
So there was that appointment, which drove Barry crazy, where the physician’s assistant did a mini neuro-psych eval on Barry. Later, we went to the lawyer’s office to redo the POA. Barry’s mood was bad and he was begging to leave like he did at the doctor appointment.
By the time we got home, I was anxious to be anywhere that Barry wasn’t. So I went to Panera and had soup and a salad. I feel bad for Barry, but yesterday was super-happy-fun-time compared to the upcoming attractions of Huntington’s. I am seriously hoping that the new increased stress level kills him before he has to go into a nursing home. If he thought the little doctor’s appointment was bad, he is going to really have a horrible time when I take him to the full-blown neuro-psych eval that still has to be done.
Things are not going to get better. Part of the problem is that I have spent the past eight or nine years doing everything in my power to make him comfortable. It has worked for the most part, but it cannot continue for two reasons: 1. The Huntington’s is too far advanced for me to really make him comfortable anymore and 2. I have to start my life up again. I have put everything on hold for him indefinitely and I am reclaiming my life.
But I don’t want to take out my feelings on the wrong people. The problem is that I have zero emotional reserves and so sometimes it is impossible for me not to over-react to problems. Last week, I actually wondered, if I slit my wrists, how long it would take to bleed out and if I could do it without screaming so I wouldn’t wake Barry up. I went over the edge a long time ago and sometimes I hear myself splat on the ground. It is not pretty.
Since I helped Barry reunite with his grandsons, I can spend more time and energy dealing with insurance-related stupidity.
It turns out that Barry’s primary care doctor’s office is the hold-up. I am stunned. They were pretending to be oh-so-helpful, acting like they were on my side. I had to hound them to find out that the reason they had not submitted the forms to the insurer was that Barry needed another appointment. They couldn’t tell me that three weeks ago? I had to hound them to even find that much out. They keep throwing obstacles in my path. As soon as they submit the forms (and I will hound them every day until they do as soon as the appointment is over), I am looking for another doctor for Barry. Period. If they fart around again, they will receive a letter from my lawyer. I am done with them.
Their actions are so hurtful. To me, to pretend to throw a drowning man a lifeline is horrific. It’s neither appropriate nor forgivable. It’s like Barry’s family all over again. “If you need anything, just call.” Pretending to be helpful is a hundred times worse than just saying, “I don’t have time to help you.” I thought I had someone caring actually coming alongside of me and helping to carry the burden. Wrong. They are adding to the burden.
This is all part of my effort to get my needs met. Frankly, that is all that matters now. I am deliberately focusing on doing things that will make the next phase of my better or at least do-able. I was burned out two years ago. To go years without getting your needs met is scary. Part of me does not care about Barry anymore. If my needs don’t matter, guess what? Neither do yours. Empathy is not possible for someone running on empty for the past few years. It is going to take me years to recover from this time in my life. If I live that long.
I wanted clarity. I believe I have it now. The problem? It seems to come at the expense of freedom.
I know what I need to do with my time and energy: get help from the insurance company (even if it means going to court) and get Barry a meeting with his grandsons. I’m not saying I am doing everything right, just that I know what I should be doing.
Do slaves have clarity? They know they have two goals: freedom and doing what their captors demand. They know what to do, when to do it, where to do it, and for how long (till they pass out or die, I assume). Compare that to going to store for a can of beans. Butter beans? Beans and franks? Lima beans? Kidney beans? Three-bean salad? What brand? What size? Does freedom equal confusion?
I feel like I am backed into a corner, like a caged animal. The insurance company will either set me free or will be endlessly attacked by me until they relent. They will not come out unscathed.
Is this the clarity I so prayed for? Really?
I spent the weekend with my “cat daughter” or “kitton” (not a mis-spelling). I hadn’t seen her since 2011. We met in 2000 when we were working in the same place. She was sixteen and going to MSU and her parents lived in Virginia. I was a mother figure to her. I helped her out when there was no one else. We both like cats.
I met her at Detroit Metro. We hugged and cried. We both let go. We put conditioner in each other’s hair (fur) Saturday and ate out a lot. Her husband, who occasionally has work projects in Michigan told her that she must eat Zaytoon’s. She says that there are no good Middle-Eastern restaurants in South Carolina. I had never thought about it. She was surprised how they had popped up everywhere. Of course we have lots of them. Michigan has the highest Muslim density outside the Middle East. We also ate at De Luca’s, where everyone in town eats the best Italian food in the city. When she got home, she told Ashok that he must eat there when he comes to Michigan. Taking her back to Detroit Metro was hard, but she needed to get back to her family (including seven-year-old Ayush) and job.
This weekend was just what I needed. I needed the time to process my feelings about Barry’s deterioration and the prospect of taking the insurance company to court if need be. I was so okay with the idea that I actually got a decent night’s sleep last night. Wow.
This morning, the nurse came to evaluate Barry. She had thought that we received help two years ago and was surprised when informed otherwise. She saw how impatient Barry is. It was a little funny. Trying to give Barry a head’s up about what he would be doing next, she told him that he would be needing to put on his socks and shoes. She did this right after telling him to show her how he gets into and out of the shower. So he took his shoes and socks and starting putting them on in the bathtub, trying to do what she told him to and saying he didn’t understand such a request. I told her, “One thing at a time.”
She said to him, “I thought you were kidding.”
He responded, “I thought you were serious.”
While she was there, a lawyer’s office called. I made an appointment with this guy, who has experience with exactly this kind of case.
I think I have about an 85% chance of getting help without taking this to court, but now the insurance company knows that I have absolutely no problem taking them to court. I can prove that Barry is a falling risk and a choking risk. Huntington’s has no cure. It’s all downhill from here. The longer they fart around, the greater the odds that Barry will fall and require a nursing home, which they can pay for. If they choose to help before the appointment, I can cancel it. The lawyer now has a copy of the insurance policy. I am ready to go.
The next phase of my life does not begin until I have help with Barry. I have only two goals in life right now: getting help from the insurance company and helping Barry see his grandsons. When I accomplish one goal, then I can focus 100% on the other. There is no “next” until I get help. I am going to pursue this until I die, Barry dies, or they provide benefits. If I lose in court, I will appeal. This isn’t over until I say so because I have nothing better to do with my time. Never mess with someone who has nothing better to do and all the time in the world to do it.
The long-term care insurance people are going to schedule an “evaluation” for Barry. In other words, they are going to look for an excuse to deny us benefits—again. I am already in the process of contacting an attorney. I can provide whatever paperwork is necessary to show that Barry is falling hazard and a choking hazard. I will remind the insurers that if they deny us and Barry falls or chokes while I am running errands, I am pretty sure they can be held liable to some extent. And let’s go for pain and suffering to boot. And if he falls, he will then qualify for a nursing home, which is way more expensive than the respite care I am currently seeking.
I don’t want to put Barry away. To me, a nursing home is Z and I want to do A through Y first. Let’s just start with them giving me the respite care I need and that I have been paying premiums sixteen years for. How about they actually do their job? This time in my life is exactly why I bought the insurance for. When the physician’s assistant asked me if I had considered assisted living for Barry, I was stopped dead in my tracks. All I want right now is a babysitter for my husband so he doesn’t hurt himself while I pay bills or go to the gym.
What they don’t know yet is that I am going to hound them until I die, Barry dies, or they provide the promised coverage. Period. Because I don’t have a job (and can’t make a real employment commitment without respite care), I have nothing to lose by pestering them endlessly. I have nothing to lose, nothing better to do, and all the time in the world to do it. I am a very bad person to mess with right now. I am a ridiculously over-educated caretaker with a mission to get myself some help. Without the help, the next phase of my life cannot begin. This life of never having meaning or a career is seriously not worth fighting for or preserving.
I hate the fact that I have to be a ranting, raving b****h to get my needs met. I really wish it didn’t have to be this way, but being a nice, good little victim has gotten me nowhere. This is emotionally exhausting, but it’s not like I have anything better to do.