Saturday, October 26, 2013

Alzheimer's Disease and Family Finances

Rachel & APR
On Friday, when I went to pick up my father's monthly prescription of Namenda, for the first time, ever, I was unable to pay for his medication. A three month's supply, from Walgreens is nearly $600. For a 30 day supply of the medication, it was about $120. Since the parents only had $120 in cash to spend until the 5th of November, and they do need to eat, I was unable to pay for it. Oh, I could have used a credit card, but I wasn't sure about the balance, so I went into a panic. The bottom line is that he was without his Alzheimer's medication. One of the reasons we pay so much, as consumers, is so that the big companies can make big bucks, with their politicians getting big bucks for the process of destroying us, financially. If my parents were alone in this situation, I could just say, well, that's the breaks. But, they aren't. Their situation is being repeated, a million fold, all over this country. Frankly, I don't see how anyone but the wealthy can deal with this disease. When you realize how much medication, that isn't generic yet, is costing, it is a financial disaster. What does a family do? No, It was wasn't that much of a national emergency. BUT.... after being ripped off for several years, by Walgreens, over my mother's cardiac medication, I was in no mood to argue. They were going to give him a 3 month's supply - for nearly $600! No way, not after being scammed on one med. I wanted to find out if I could get a generic version of what he was taking, and how much other chains were charging. Walgreens, like most chains, can't be trusted all that much. I was reading, somewhere that they are doing about a 400% mark-up with their medications. The cardiac medication my mother was taking was being so grossly over-charged, her physician (with whom I don't get along - I think he's a you know what, but he saved her life, so ...) agreed with me. He called the pharm and told them off. The problem with medications for Alzheimer's is that we just don't know if it does any good, or not. From what I can tell, donepezil may be better. From what I can tell, Namenda may be more of a sedative than anything else. What Namenda does do is work with the Glutamate receptor in the brain, which is responsible for muscle tone. Anyone who works with Alzheimer's patients knows that muscle tone is a very big deal. The very first sign of someone on Alzheimer's is spacial. A person in the early stages has difficulty getting up from a table. It is the earliest visible sign. Then comes movement, doing stairs, and walking up and down stairs in a strange way. Those of us watching things knows there is a connection between lack of sugar in the system and impairment. No matter how much medical research is done, they are still learning about the disease.
"...We all know about the medications available – there are the FDA approved medication treatments basically in two groups: the so-called cholinesterase inhibitors, such as Donepezil (Aricept), Galantamine (Reminyl, Razadyne), and Rivastigmine (Exelon). And then there are the “NMDA receptor antagonists,” of which there is one medication currently approved and on the market, Memantine (e.g., Namenda).
Basically all of these medications can help, but they are only treatments. Generally a patient who is helped but Aricept or Namenda can expect maybe 6 months where the progression of their dementia (as Alzheimers is a disease of progressive cognitive decline) is effectively halted. In rare cases some improvement in cognitive functioning can occur. However, these drugs all treat the symptom of the disease (e.g., the cognitive dysfunction) and they do not treat the underlying issue – the underlying brain damage that causes the cognitive deficits in the first place. Also, these drugs (like all drugs) have side effects...."
I've been online, looking for a generic for the medication. There is none, not yet (at least not in the US). Don't worry, though, Forest Labs, which makes the product is doing very, very well, their profits way ahead of their projections with a 2nd quarter way ahead of projections. Not to worry, though, Namenda is not scheduled to go generic until 2015. By that time, my family will, unless a miracle happens, have lost everything to this damn disease. But, don't feel sorry for Forest labs, their earnings (profits) on Namenda were twice what they had projected. Isn't that special? In 2010, Namenda alone earned the company a $700 million profit. It's much higher today. Want to know what really makes me mad about this? Well, Forest Laboratories is one of the worst offenders in moving their profits off-shore, so they don't need to pay taxes. They get away with ripping off the American taxpayer, so we're basically giving them corporate welfare. Oh, but they're making a profit and profit is the name of the game, screw the little person. Nothing matters but big corporates getting their fair share of our life's blood. Never mind that, over the years, my parents have paid millions of dollars in taxes. But - they're just little people, watching companies like Forest literally break them into nothing, so they can make a billion here and a billion there. What is so fascinating is that, in the grand scheme of things, Forest Labs donates primarily to Democrats, and doesn't give that much, at all. They donate primarily to NY Dems. They're also in the cross-hairs for their offshore tax dodges. Do you know what it's like to be forced to tell your mother that we can't afford my father's medication - or rather I was so pissed with Walgreens that I wasn't going to get it? Never in my life did I think I would be in this position. We're at the point in life, thinks to the deprivations of Alzheimer's on the family finances, that we're now choosing between food, medication, utilities, and property taxes. Forget the little luxuries like gas, car repairs, or the parents' getting their furnace repaired. There's no money for that and their medications - thanks to being ripped-off. Walgreens has been violating cardiologist's orders and selling my mother their most expensive generic for medication she needs to stay alive. She could get the meds for about $15 for a 30 day supply, but they've been charging her $75 to $85, violating a few laws in the process. She would still be paying the higher price if I'd not started agitating. The cardiologist told off the pharmacy. So, now they're sticking it to us, the other way. That's at least $70 a month. Multiply that by 12 and you get the picture. The questions is, how much more are they overcharging us. One of the reasons this is such a problem is because of Alzheimer's Disease. Not only does it destroy a family, emotionally, Alzheimer's ruins a family, financially. As a rule of thumb, just basically figure, if you're keeping a person at home, the out of pocket expenses are going to be about $1000 a month for medical and additional up-keep. That's $12,000 a year. When a person is getting about $1000 a month in social security, you can see the problem. The disaster has already occurred. One of the ways you learn that the person in your family, usually a parent, has already passed go and the disaster has occurred is when they refuse to allow you to help with the finances, or get nasty about it. Then, there will be a big financial spree - spending money that is completely out of character. My father blew $250,000 in a three month period - and we did not catch it. When I would ask, he would get nasty. BINGO - that's when you demand they see someone about Alzheimer's. Combine the physical symptoms of not being able to get up from a table, properly, going up and down the stairs in a strange way, and the spending, nastiness about finances, and you have a 5 year head start on the real disease setting in - if you are lucky, and know what to look for. We did not. Ergo, life now is financial hell. Predators have a way of sensing the problem before the family has been devastated, emotionally and financially. And - so, we're stuck. Thanks to this obscenely selfish disease, my parents, who are in reduced circumstances with cash flow. They are no different from millions of other senior citizens who have had financial problems due, primarily to the financial crash of 2008. I know of so many other seniors, people who were once comfortable, their lives all planned, barely making it. Some, like my parents, have problems due to Alzheimer's. Others, like numerous friends, have lost due to brokers, stock failures, and not being able to keep up with all the changes in the markets, fast enough. These are good men and women who worked hard, paid by the rules, paid their taxes, and did everything the right way. They're now wondering where they are going to come up with the money to pay for heating oil, how to stay warm, and keep food on the table. Forget that they once had steak several times a week, now, they can't even afford chicken! It's sad, watching people who had it all, living hand to mouth, bravely putting up a front, not bothering to even say what is hurting them. They've been pushed aside because they are nothing but fodder for the ultra wealthy. They have been betrayed by Republican Congressmen and Senators they elected, knowing they would stand up for them, and for their issues. Instead, they only support the ultra wealthy. That's the real problem in this country. We have become a nation that worships the false god of wealth, gained at any cost. There is nothing wrong with wealth. I aspire to it on a daily basis. There is something wrong, though, when it is the worship of those who are wealthy, to the detriment of everyone else. There is nothing wrong with a pharmaceutical company making a 100% profit. What is immoral though, is hiding that money off shore so they can benefit from our largesse and grants. If these guys paid their regular taxes, fine by me. In the meantime, good people who have always done what is right, paid their taxes on time and been upstanding members of the community are at the brink of starvation. What's wrong with this picture? Fast forward three days. My father has not had the Namenda since Friday evening. On Sunday morning, he came out for breakfast, quite chipper. My mother wasn't feeling well, so she went back to bed for awhile. He cleaned the kitchen and put things up where they belonged! Last week she had told me he was so far gone, he couldn't even do this. Every morning, after taking his medication, he would sleep all morning. There was no nap, he was wide awake, reading a cowboy novel. He had a Sunday afternoon nap, took a bath, cleaned himself up, really well, and had a good day. He hasn't been doing this for months. We've made a family decision to keep him off the Namenda for awhile and see what happens. He was happier today. His eyes looked better. His attitude was better. We're now all upset because of what we may have been doing to him, all in the name of trying to help. I'm so glad I had that meltdown at Walgreens!

Friday, October 18, 2013

The Battle of Tortillia (Chip) Flats

Sarah Catherine Garland 11/16/2012
One of the truly annoying, and eventually terribly unhappy parts of Alzheimer's, when you get into late Stage 4, is the fact that the person who has it, regresses to the stage of a 4 year old - a very spoiled, annoying, willful 4 year old.   It's a very selfish disease.  The sufferer becomes, like a toddler, completely self centered. 

Case in point:  Yesterday we were having lunch at Comel, one of the best Mexican eateries I've ever found.  My father was double dipping his salsa.  My mother caught him.  She told him not to do it, that he new better.

He threw his chip down on the table, leaned back, arms folded across his chest.  "Well, I just won't eat another one, if that's the way you're going to treat me."

She was going to relent. I told her not to. He didn't have another chip, unless he thought we weren't watching, then he double dipped!

My friend Sharon was telling me about Nick, who is much farther along than APR.  She said he would drive her crazy doing things like that.  Her children never did these things, they were too well behaved. 

FYI:  He ate his entire meal.

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