Tuesday, December 30, 2008

Living Alzheimer's From the Front Row

I often use the term "living Alzheimer's from the front row". This term describes caregivers and others that watch Alzheimer's develop 24/7. Once the disease strikes they get to witness the craziness of it all. On one hand, you have the person suffering from Alzheimer's; on the other hand, you have the person responsible for caring for that person. Unless you are an Alzheimer's caregiver it is almost impossible to either understand or comprehend what it is like living in the front row.

Until you sit in the front row you won't be able to comprehend what it is like living in the "front row" . In the early days of caring the caregiver deals with a disease that is not only impossible to understand; they live with a disease that turns their world upside down. Imagine a person you know all or most of your life and their behavior changes--suddenly--and for the worse. This person, your loved one, begins to act out behaviors with you that you have never seen or experienced before. You want to scream at them or worse, but you come to the realization that this only makes matters worse. You cannot reason with a person suffering from Alzheimer's. They believe what they say to be true and nothing can change it.

It is difficult to describe the range of emotions a caregiver might feel or experience in a single day. Imagine being happy and then sad, caring then angry, focused then frustrated, an almost endless stream of feelings and emotions that conflict. The caregiver lives an anxiety filled life day-after- day. The caregiver nevers knows when this craziness might come to an end. They do know this uncertain fate is heart wrenching.

Most people have difficulty dealing with change. The Alzheimer's caregiver deals with change on a daily basis. Never knowing for certain what is coming, but knowing fully it is coming. Informed caregivers try to get ahead of the curve so they can get prepared for these harsh, sometimes hard to comprehend changes. Knowing that your loved one is going to forget simple things like how to brush their teeth, how to take a shower, and even how to eat is not a pleasant thought. The actual experience and feeling of helplessness cannot be described. Knowing that the day is coming when they --won't know you-- is the most horrific feeling of them all.

It isn't pleasant living in the front row. Yet, somehow we do it. Many of us for years. Trust me when I say this, if you are not living in the front row you could never imagine what it is like.

If you know a caregiver get involved. The first thing you can do is listen to them as they vent. The next thing you can do is arrange for them to get away from it all for a period of time. Hug a caregiver, I assure you it will be an experience you won't forget.

Bob DeMarco—My Profile

Also see:

A Wonderful Moment in Time--Mom dances for the first time in years

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A Simple Three Minute Test Can Detect the Earliest Stage of Alzheimer's disease

High cholesterol levels in your 40s raises Alzheimer's risk

A Wonderful Moment in Time--Mom dances for the first time in years

Wonderful people.

I have a vivid image of the look on mom's face and of us dancing. I will have that image in my mind forever. This is the kind of moment that really knocks home to me why I am here with mom. Moments like this help keep me energized and focused.

My name is Bob and I am the sole caregiver for my mother who suffers from Alzheimer's disease.

One of the biggest problems I face as a caregiver is keeping my mother socialized. If it was up to her she would sit around all day in the dark, rarely speaking. If you have experienced this you know how really disconcerting this can be.

About two years ago, I decided to take my mother out to the Banana Boat in Boynton Beach. The Banana Boat is an outdoor restaurant on the Intercoastal Waterway. The "Boat" has an outdoor restaurant and an outdoor bar where you can eat and listen to live music. Since my mother rarely speaks when we go out to dinner, I decided we would sit at the bar and eat. This would insure we had movement and people talking around us.

My mother ordered chicken wings and french fries, one of her favorites meals. My mother's eyes almost popped out of her head when she saw "a big basket of french fries". She was delighted. We had a very good time that night and I decided to do it the next Friday night. Pretty soon we were doing it most Friday nights.

After a few weeks, women started to come over and talk to us. The attraction was an older man with his elderly mother; they wanted to say how nice it was to see us. Keep in mind my mother was 90 at the time. Of course, they were saddened to hear that mom was suffering from Alzheimer's. Soon both women and men were coming over to talk.

I should point out that the Banana Boat is the kind of place that attracts many of the same people week-in-week-out. Since we go around 6:30 we catch the happy hour crowd many of whom stay until 8.

After a while, a small group of people started saving a chair for my mother as they were expecting us. The first time we missed a Friday one woman asked for our phone number and told me they were worried about "mom" when we didn't show up. So they wanted to be able to check if we hadn't told them we wouldn't be coming the next week. Now we call to let them know if we are not coming.

As time went on, our little group of friends started to get bigger and this turned out to be a "God send". Each week, one by one these wonderful people come up and start talking to my mother. She really enjoys this and her attitude perks up right away. They treat her just like everyone else and talk to her like she is one of the gang. This year a group got together and took my mother to the casino to play slot machines on here birthday. I cannot put into words how much this meant to mom and me.

My mother loved to dance. So, each and every week I asked her if she wanted to dance. Our new friends would also ask mom to dance--men and women alike. I could tell that mom wanted to dance but she always said, no. Mom is no longer confident around crowds or people she doesn't know, so while her instinct is to dance her brain is telling her no. I can tell you mom was never shy about dancing and she is a good dancer.

Last Friday night, I asked mom if she wanted to dance. She said, no. But, I could tell she really did want to dance this time. When we were getting ready to leave, and as mom stood up, I started dancing with her right on the spot. She was shaking it a little bit and had a big smile on her face. By the time we were done people had tears in their eyes and smiles as big as big could be. Wonderful people.

I have a vivid image of the look on mom's face and of us dancing. I will have that image in my mind forever. This is the kind of moment that really knocks home to me why I am here with mom and situations like this really help me to keep at it.

I can assure you it was really a wonderful moment in time.

Original content the Alzheimer's Diary

Five Ways to Keep Alzheimer's Away

A recent article on CNN.com, Five Ways to Keep Alzheimer's Away, mentions five ways to keep your memory sharp: antioxidants, fish oil supplements, phosphatidylserine supplements, curry, and Cross-training your brain. This article is part of a discussion about Alzheimer's and yesterday's news about how herbal supplement Ginkgo biloba doesn't stop Alzheimer's. I believe that supplemnts are a good part of any regimen to improve health. Scientific evidence supports the value of taking supplemens and indicates that supplements can help stave off a long list of diseases including heart disease, cancer, and Alzheimer's.

However, I am starting to get the feeling that people believe there is magic in those pills; and that, they can start taking these supplements in lieu of healthy life practices and get a positive result by pills alone.

It is my belief that supplements are worthwhile and a great way to stay healthy. However, it is also necessary to take good care of you body and address medical issues if you want to stay healthy and disease free in older age.

For example, I recently wrote about how high cholesterol in your 40s increases the odds of contracting Alzheimer's--by 50 percent.

I believe most people know if you suffer from hypertension (high blood pressure) the odds of suffering from any number of diseases rises dramatically as you age. Less well known is the fact that if you have a big belly in middle age the chances that you could suffer from dementia are tripled.

Previously I wrote an article about Alzheimer's and the likely devastating effect it could have on baby boomers. I suggested a list of things that are proactive and have measured scientific benefits. In addition to the issues with high blood pressure, high cholesterol, and a big belly I suggested a few additional ideas that I believe can help.

A recently released study showed that regular exercise is one of the best ways to reduce your risk of dementia and can help slow progression of Alzheimer's disease. Another recent study at Harvard found that those who regularly drank a cocoa flavanol rich beverage had an eight percent increase in brain blood flow after one week, and 10 percent increase after two weeks. Studies also show that people with higher levels of vitamin B12 were six times less likely to experience brain volume loss.

These are the kinds of things I believe raise the odds of fighting off Alzheimer's and dementia in older age. Please keep this in mind, the longer you live the greater the chance you will suffer from dementia. Once Alzheimer's or dementia present it is to late. So the time to get started is now.

My mother suffers from Alzheimer's and is 92 years old. Prior to the age of 85 she never suffered a major illness, never had an operation, and was still functioning on her own.

Bob DeMarco—My Profile
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Five ways to keep Alzheimer's away

By Elizabeth Cohen
CNN Medical Correspondent

(CNN) -- Blanche Danick may be 86 years old, but she's pretty hip. She keeps up with all the latest health news, and a while back, she called her daughter wanting to know whether she should start taking the herb ginkgo biloba. She'd heard it might stave off Alzheimer's disease.

"I told her not to bother, that it wouldn't make much of a difference," says her daughter, Edythe London, a professor of psychiatry and pharmacology at the University of California, Los Angeles. "On the basis of what I've read, I don't think it staves off dementia."

London's advice makes a lot of sense, according to a study out this week in the Journal of the American Medical Association. Ginkgo is a top-selling herb and has been hailed by some as a memory-booster, but the new University of Pittsburgh study found it didn't help prevent Alzheimer's or other forms of dementia in more than 3,000 elderly study subjects.

Ginkgo manufacturers say this isn't the first -- or the last -- word on the herb. "There is a significant body of scientific and clinical evidence supporting the safety and efficacy of ginkgo extract for both cognitive function and improved circulation," said Mark Blumenthal, executive director of the American Botanical Council.

London's still skeptical. "But I do tell my mother there are other things she can do," says London, who's studied the brain and aging. "I tell her to go out and do things and see people every day and be active." Studies have shown that physical exercise, the kind that keeps the heart healthy, also keeps the brain healthy, according to the National Institutes of Health's Cognitive and Emotional Health Project.

People are like rats, London says. "If you put a rat in a cage by itself, it won't do well on cognitive tests. But if you give it toys and put other rats in its cage, they're going to be smarter rats."

In addition to playing with toys and hanging out with your fellow rats, here are five other tips for keeping your memory sharp. London says they help work on memory centers of the brain, including the cerebral cortex and the hippocampus, identified in the diagram above.

1. Antioxidants

London makes sure her mother takes vitamins A, C, and E. They're antioxidants, which prevent cell damage and are believed by some to slow down diseases of aging. "There are studies that suggest antioxidants might prevent dementia," she says.

2. Fish oil supplements

Dr. Gary Small, director of the UCLA Center on Aging, says aging brains show signs of inflammation, and fish oil has anti-inflammatory properties.

3. Phosphatidylserine supplements

Phosphatidylserine is a lipid found naturally in the body. Small says he's not 100 percent convinced these supplements will help stave off dementia, but they're worth a try. "If I start having memory problems when I get older, I'll give them a trial run and see if they help," says Small, author of the new book "iBrain: Surviving the Technological Alteration of the Modern Mind."

4. Curry

Small, who's 57, says that as he gets older, he might also try eating more foods with curry in them. "Some studies in Singapore show that those who ate curry once a week had better memory scores," he said.

5. Cross-training your brain

"Our brains can be made stronger through exercise," says Andrew Carle, assistant professor of in the department of health administration and policy at George Mason University. "In the same way physical exercise can delay many of the effects of aging on the body, there's some evidence cognitive exercise can at least delay the onset of Alzheimer's."

But Carle says it's not enough to do just one kind of brain exercise. "Doing a crossword puzzle every day is good, but it's the equivalent of doing only pushups -- your arms will get strong, but not the rest of your body."

He recommends doing other activities in addition, such as computing numbers in your head instead of using a calculator, or using one of the "brain gym" computer games designed to enhance brain function.

As for London, who's 60, she thinks her best bet at staving off dementia doesn't come in a bottle, or on a dinner plate, or in a computer game. "I'm going to keep working on my research, and surround myself with young people, and do a lot of exercise," she says. "I'm going to be a happy old lady. That in and of itself is going to do a lot of good for my brain."

Living Alzheimer's From the Front Row

Alzheimer's Reading Room: The number one site on the Internet for current information, research, caregiver tools, and insight into Alzheimer's disease.

The $4350 Medicare Donut Hole

The term Medicare Donut Hole (or Doughnut Hole) refers to the gap in prescription drug coverage between the Medicare initial coverage limit ($2700.00 for calendar year 2009) and the catastrophic coverage threshold ($4350.00). The term catastrophic coverage threshold is the most misunderstood and hard to understand term you might ever encounter. Most people believe that Medicare will cover their drug purchases once they hit $4350. This is far from the truth. Medicare catastrophic coverage actually kicks in after you, the taxpayer, pays out of pocket $4350. This means catastrophic coverage beings at $6,153.75. The key words here are: threshold and coverage.
You can go to Dunkin Donuts and get a delicious donut hole for about 25 cents.
If you eat the Medicare donut hole it is going to cost you $4350.
In this article I am going to explain: the deductible, the initial coverage limit, the Medicare donut hole, the catastrophic coverage threshold, and what you can expect to pay for prescription drugs in 2009 if you are on Medicare.
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The initial phase of Medicare coverage includes the first $2700 of drugs consumed in a calendar year. When you are within the initial coverage limit you pay for the first $295 of drugs you consume--the deductible. Then, you pay 25 percent of the next $2405.00 ($2700 less the $295 deductible) of prescription drug purchased.

Here is the math and what you will pay:

  • the $295.00 deductible

  • $601.25 (25 percent of $2405)

  • Total out of pocket expense $896.25

  • Keep in mind when calculating the $2700 initial coverage phase cost your deductible and co-pay are included in the amounts. So in the initial phase you can expect to pay $896.25 and Medicare covers the additional $1803.75.

    If the total dollar amount of drugs you consume is less than $2700 then your cost is capped at $896.25 (it can be less, this is the max for this phase). This calculation assumes the drugs you are taking are covered by Medicare. There are certain drugs that are not covered.

    Once you exceed the initial coverage limit you enter the so-called Medicare donut hole. This means you pay 100 percent of the cost of prescription drugs purchased and Medicare pays $0 (zero). This phase of coverage should be called the empty hole. Why? Well if you look at a donut and take a good hard look at the area called the hole you will notice there is nothing there. In the case of Medicare, once you enter this phase you are on your own and you pay 100 percent of the costs. You can go to Dunkin Donuts and buy donut holes they are very tasty. You can also buy supplemental prescription drug coverage to help reduce the cost of the Medicare donut hole-- not so tasty.

    Here is the math if you max out the donut hole coverage and before you get catastrophic “threshold” coverage. You pay:

    • $295 (the Medicare Deductible)

    • $601.25 (your share of the initial coverage)

    • 100 percent of the next $3,453.75 ($6,153.75 minus the $2700 initial coverage phase) or $4350.

    Catastrophic coverage as you can see begins at $6,153.75 and after you spend out of pocket--$4350. I hope this clears up the difference between catastrophic coverage threshold and catastrophic prescription drug coverage. There is good news once you exceed the Medicare catastrophic coverage threshold you will pay five percent co-pays on all drugs purchased. Of course, you will pay less if you don't have to pay for an entire donut hole at your local pharmacy.

    My mother, Dorothy, is 92 years old and suffers from Alzheimer's disease, high blood pressure, hypothyroidism and high cholesterol. She takes two drugs that by themselves send her into the donut hole--Obama Laying the Groundwork for U.S. Health Reform. I wrote previously about how Medicare pays full retail for the drugs it purchases on behalf of Medicare recipients. In other words, they pay the same as an individual would pay if they walked in the door of a pharmacy and purchased the drugs for themselves. Make sense to you? Oh, and by the way, Medicare is the largest purchaser of those two drugs in the world. I guess all the politicians in Washington felt that the transfer of our tax dollars to drug companies at 100 percent retail price was a good thing. Or maybe they benefited by doing so. I'll let you decide.

    I hope President-elect Barack Obama and Tom Daschle will address this issue. If they want to put money in the pockets of consumers this would be a good way to do it. I feel certain many of those in the donut hole would put this money to work in the economy immediately. At least, they might be able to afford a donut.

    If you are over 65 and on Medicare you could also consider joining a Medicare HMO. My mother is a member of Humana Gold Plus and she does pay less during the initial phase. However, unless you are well below the recognized poverty level or live in a state that helps at a low threshold of income you will find it difficult to escape the donut hole.

    I intend to write more about this soon.

    If you would like to get your voice heard on health reform go to Change.gov. You can enter your ideas into a simple form and submit it. If you have extra energy you might email your congressperson or United State's Senator and ask them to explain why Medicare pays full retail for prescription drugs. I am sure we would all like to hear the answers.

    Seniors Still Mystified By Medicare’s Drug ‘Doughnut Hole’
    Posted By Victoria E. Knight

    Almost two-thirds of enrollees in Medicare Part D don’t fully understand the concept. More alarmingly, more than one-in-four either don’t know what the coverage gap is or how it works, according to a national survey of 1,000 Medicare Part D participants done for Medco Health Solutions, the big manager of pharmacy benefits.

    In case you were wondering about the dimensions of the doughnut hole these days. The coverage gap will open up after beneficiaries and their drug plans have spent a total of $2,700 on medications in 2009. Seniors are then on the hook for the next $4,350. After that, the drug plans picks up most of the tab.

    Unfortunately, three-quarters of enrollees mistakenly believe that only their out-of-pocket costs count towards the first $2,700, when in fact they need to factor in the health plan’s contributions as well, according to the Medco study.

    “This misunderstanding gives many seniors a false sense of security that the coverage gaps is months away, when it reality, it could hit them with their next refill,” Richard Dupee, president of the Massachusetts Geriatric Society and chief of geriatrics at Tufts Medical Center, told the Health Blog. “Without knowing how the coverage gap works, it’s simply impossible to takes steps to push off or prevent it.”

    The WSJ has tips on how to become a doughnut-hole dodger as well as advice on what to look for in coverage this open enrollment season (you have until Dec. 31 to decide). Perhaps unsurprisingly given the study’s findings, Medco, which offers Medicare Part D plans, has just launched a new web site “What’s Your Gap?” with its suggestions on how seniors can save.

    Almost three years since the addition of drug coverage to Medicare, seniors remain confused about the infamous coverage gap known as the “doughnut hole.”

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