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Posts Tagged ‘advocating’

Today I spent a good part of my afternoon dealing with insurance companies. It never ceases to amaze me how these huge corporations can charge exorbitant amounts of money for the privilege of insuring you, then when you actually need to use the insurance you have paid for, do everything in their power to make it difficult for you to do so. I was helping someone I care about very much traverse the deep, dark depths of our healthcare system. This person is a complete novice when it comes to being ill, and a very nice and kind human to boot. Allowing him to try to figure this out alone, would be like sending a lamb to the slaughter. The diagnosis is possible lung cancer. I told him, like a roller derby queen with rivals on her heels, you have to elbow and bully your way to the front of the line, because time, particularly with this disease is not your friend. This, I can speak to with experience. Rick also had lung cancer. It was not good to him, as emphasized by the fact he is not here to tell you his story himself.

My friend has an HMO. This supposedly means he can pick and choose from the pool of doctors within his network, rather than be limited to a certain group of physicians. So, we got some recommendations for excellent doctors in this field, and he contacted his primary care physician who in turn sent off a referral to the oncologist we had selected. As luck will have it, his insurance card listed a particular county under the primary physicians name which is the county next to mine. The oncologist he chose is situated in my county. This completely threw a monkey wrench into an already unbelievably red tape bound system, and the wheels of progress came to a loud and grinding halt. I spoke to three different representatives, each one providing us with varying interpretations of his coverage. Now, there is fluid building up on the outside of this man’s lungs while all this is transpiring, a situation destined only to get worse not improve as time marches on. Phone calls are going back and forth and the clock is ticking. Finally, a healthcare representative got on the phone with the oncologist’s insurance person and some sanity returned where lunacy had reigned supreme. Good Lord. Still, we were informed an authorization had to go through the big machine and be approved first prior to seeing the oncologist he had chosen. Okay, let’s do it. This, the rep said, takes 3-4 days. Once that is done, then an assessment is done at the physician level to determine the urgency of the situation. Now, I didn’t go to school for twelve years, I don’t wear a white coat nor do I dangle a stethoscope around my neck, but even I can pretty much predict the outcome to that one. It was urgent two weeks ago. Sigh. A whole other question lingering in the background is how, when under a physician’s care for heart issues the past year, did one of those doctors not hear the sounds in this man’s lungs with an instrument in their ears? Particularly, when I could hear the congestion while standing next to him. Many times as we get older, our complaints are written off as hypochondriacal, or lumped under the “it comes with getting older” umbrella. This too, needs to be looked at under a magnifying glass. For years if I complained about not feeling well it was dismissed as women problems. Right. I am missing two non-essential parts due to doctors waiting too long to diagnose a situation.

No sooner had we put the wheels in motion to get this approval going, another phone call came in telling us it couldn’t be done. It seems in the insurance company the right hand didn’t know what the left was doing and we had been given the wrong information. In the state of California our insurance is divided up into sections. In order to go to a doctor, even under an HMO, the doctor must be located in the section you reside in. We could have used my address but as we’d already explained the situation to several people that train had already left the station. So, back to square one, we began the referral loop for an oncologist in his area. This has been processed, thankfully, and an appointment is on the books for he end of next week. I pushed for sooner, but it seems there are a lot of people dealing with cancer at the moment, so we wait. In the mean time, if his situation goes from tolerable to not, he must go to the ER immediately. I am exhausted, but this is nothing compared to how frightened and unsettled my friend must be feeling as he is the one with the ticking time bomb inside his body.

Hopefully, one of these days we’ll actually get elected officials willing to step up and do something about the exorbitant drug costs as well as the broken insurance situation in this country. It is difficult to get them motivated in the current your side and my side mindset existing in our legislature. To add to that, the people in congress have their healthcare paid for so they aren’t really pushed against the wall on their end to do anything about it. Perhaps that should change?

Anyhow, for this day we have put out the fire. I’m sure many others will pop up along the path but I feel some advancement has been made. Truly you have to be your own advocate if you wish to have the end result you are looking for when dealing with a medical condition. Never be afraid to say you don’t agree or fight for what you know needs to be done and where you need to be seen.

My vent for a Thursday. Have a great day. Stay healthy.

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Since last I wrote a new wrinkle has been added to my already untidy life, my mother fell and broke her hip. For a woman in her nineties my mother is somewhat of an amazement. The last time I took her in for a visit with her primary care physician he commented on how well she continues to thrive for a lady of a certain age. (You can’t see me but I’m knocking on wood this continues. We are betting she blows out the candles on her 100th birthday cake.) After running a mind boggling battery of standard tests checking everything from the length of her earlobes to her how well she flexes her pinkie, he could not find anything concerning……..well, physically. Mental prowess, I’m afraid, might earn her a lower grade. Mother’s short term memory has been declining steadily over the last four years. Though we continue to share conversations where both parties contribute, often when I tell her something it quite literally goes in one ear and immediately exits out on the opposite side. Repeat, pause, repeat, is the mantra at our house.

Certainly memory loss when plowing through your nineties is not unexpected. Like a trusty old vehicle things begin to corrode and function less efficiently as time passes. Interestingly enough, no matter how degraded her short term memory has become her core being remains intact. Her well appointed apartment is neat as a pin with all things folded neatly and a place for everything and everything in its place. Every Thursday at 11:00 she gets her hair done, and whether or not the earth is facing imminent destruction at 5:15 that Manhattan with one cherry and three ice cubes needs to show up in her special glass at 5:00. Some things, despite the complexities of life, never change.

Aside from the dementia dogging her heels my little mother (I use little only in reference to her stature, as she’s huge in attitude and personality) does battle with OCD. As of this writing I am unhappy to report that it’s Mother 1 – OCD 2,460,910. Most likely she should have been treated for this years ago but again I point to her sometimes obstinate nature, in-born pride, and the lack of information they had about such things in her younger years. Thus, we all deal with the consequences of incessant tidiness and a need for perfection, but this is balanced out with her sweet disposition (most of the time), undying love of family, indomitable determination, and generous nature.

Though I don’t allow the internal conversation to bubble over and fester, my mind can’t help but conjure up the what if’s of a parent getting older, a serious injury, and the statistics surrounding such a fall and break. I am still processing the loss of my significant other last year and the thought of losing another person close to me might trigger a full on anxiety attack if I let it have its way. Often I have told Miss Boo, the Queen of Cats, I expect her to live to be at least thirty, as I couldn’t imagine a world without her silly face staring at me over the laptop in the morning. I choose to hold on to positive thoughts, enjoy as much time as I can with my mother and my dear kitty, and be thankful for all the years, good and bad, we have shared on this planet. Someone said to me somewhere along the way “Death is an integral part of life. We all suffer loss. If you can’t learn to handle it, it will make the act of living far more difficult.”

Mother has put the surgery behind her plus three days in the hospital and is now occupying a bed at the local skilled nursing facility where they will rebuild her stamina while her leg mends. This process, or so I am told, is a combination of rest, attitude, and general level of health and unique to each individual. The State of California legislators passed a law a while back banning the use of railings, bed alarms, or any type of restraint in extended care facilities such as mother is staying in. Struggling to comprehend the reason for such a law, because to me these safety measures are needed, I was given to understand some patients have been injured by the railings. People have gotten tangled in the railing apparatus thus prompting such legislation. The bed alarms, or anything restricting the movement of the patient are now viewed as a form of mistreatment. If dealing with a heavily sedated patient or someone with less capacity to understand what is and is not safe for themselves, it seems to me there might might be room for some exceptions to such a ruling.

When she was transferred I was told by the charge nurse that in cases where dementia has been diagnosed the family is expected to be at the facility 24/7 to watch their loved one. Once I closed my mouth after that statement, I said “really”? What do people do who have small children, jobs, school, …….um lives? What do those people do with a request like that? What do people like myself who aren’t blessed with a large extended family or a large bank account do in such a situation? We are not talking a couple of days but rather several weeks or far longer. I adore my mother and would happily do anything for her but even I, in spite of the large red “S” emblazoned on my J Crew tee, do not have enough stamina to pull that out of my hat without some consequences to my health.

I was told by one of the CRN’s they are short staffed and she works long shifts. Apparently they fill out their staff with family members to make up for the lack of manpower. For anyone going through such an ordeal set up a case meeting immediately such as I did. At that meeting I explained my situation and that I could not “live” at their facility. Alternate solutions after the meeting such as a CRN from the facility checking her at regular intervals, keeping her bed at it’s lowest height, and putting pads on the floor have been put into place, when I am not on the premises. These are not optimum solutions certainly but better than instituting no precautions at all. Also a caregiver (at our expense) has been brought on board three nights a week to be there so I can get some rest. This at the suggestion of my cat who had placed an ad in the paper looking for a new home with a human who lives there once and a while.

The food is another beef I have. (I use the term beef here in the loosest sense, because what they have been serving thus far hasn’t been anything even closely resembling beef or any other meat I recognize.) Though I realize their food can’t be heavily seasoned or spicy due to dietary concerns, at least it could be palatable. Yesterday, I swear to God, lunch looked as though someone had regurgitated on the plate. That being said, I bring in the food. I label it and it is put in their fridge for her use. After three days it is tossed. Somehow I suspect someone is participating in some of this bounty because I left a to-go container with a baked potato and delicious gooey ribs in there clearly marked and dated and mysteriously it opened the refrigerator door in the middle of the night and escaped to wherever uneaten ribs go to avoid the inevitable. Huh.

The food issues, like any health issues, require you advocating for your loved one. Over the past ten years I have been called into duty to be a caregiver for someone I hold dear on more than one occasion. They are ill and can’t do it for themselves so you essentially become their “voice”. If a procedure seems wrong trust your instincts and speak up.

Another tip is to get to know the staff. I have gotten to know a lot of the nurses personally. They bend over backwards to keep my mother safe and well tended to. One nurse, Rowena, has been on shift often during my mother’s stay. Originally from a poor village in the Philippines, Rowena is one of thirteen children. She seems fascinated with my only child status. When I told her I had no siblings at first I think she thought I was kidding her. Nope, just me. The tallest, the shortest, the best, the worst, and yes, the one and only princess on my block. The matriarch of her clan is her 105 year old grandma. “Grandma” was described as a tiny woman with silver hair down to her waist who enjoys squatting on the floor of her modest home and sharing the wisdom of her many years with her offspring. One such pearl, according to Rowena, was that the eldest of the clan are tasked with showing the younger members how to care for their parents as they age. In other words how I treat my parents will be a guide for my children as to how to treat me when I may need their help. Interesting. Hope mine are paying attention.

So another chapter opens up in my roller coaster life, and just when the dust was beginning to settle on the last one. Guess I can honestly say that above all things I am rarely bored, which I believe is a good thing. As usual life offers up new lessons to ponder as the days unfold. I try to keep my eyes and ears open to what is coming my way and either tuck it away for future consideration, pass it on, or release it. I had a friend a long time ago who had a tee shirt that read “keep the best and leave the rest”. Guess that’s kind of how I view all this information coming my way each day. Take with you what is relevant and leave behind you what doesn’t pertain to your life. Have an excellent day!!

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