Alzheimers Caregiver Lament -- This is Not the Person I Knew

In order to communicate effectively with a person suffering from Alzheimer's disease you need to come to an understanding that they are now living in a new world -- I often refer to this as Alzheimer's world....

When I hear these words -- this is not the person I knew, I am greatly saddened.

I hear these words on television, read them on the Internet, and in the newspaper. I hear these words in person.

In most cases the person speaking these words is angry, in a constant state of angst, or confused.

The look on their face tells the story. The tone of their voice sounds like a cry for help.

This is not the person I knew.

It is not hard for me to understand how an Alzheimer's caregiver might come to this conclusion. Alzheimer's disease is difficult to understand, hard to accept, and is disconcerting.

The behavioral changes that come with Alzheimer's disease cause the caregiver to experience a range of negative emotions that come on with a power that is equivalent to a human tsunami.

Anger, sadness, feelings of hopelessness, and the inability to "cope" are common. Resultant depression is common.

Concluding or believing that the person you know, is not the person you know, is an easy way to make sense of something that is very difficult to understand.

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This easy, erroneous conclusion, does comes with a consequence that is psychologically devastating and debilitating. This conclusion brings with it an almost certain outcome -- the inability to deal with Alzheimer's disease in an effective manner.

Alzheimer's is an illness. A disease in the brain. It differs from most other diseases because it lasts for years, often more than a decade. There is no cure.

The person you know is still the same person with one simple exception -- they are ill. They suffer from a disease. They suffer from Alzheimer's disease.

Alzheimer's disease changes the way a person talks, acts and behaves. The person suffering from Alzheimer's disease often becomes mean. Meanness is a symptom of the disease.

Meanness comes as a result of the Alzheimer's sufferers inability to cope with their surroundings. Alzheimer's brings with it a cognitive dissonance that is hard to imagine. This dissonance, these unsettling feelings, cause conflicts within the person suffering from Alzheimer's. These internal conflicts often cause the sufferer to act out with behaviors that appear to be completely irrational. This is a symptom of Alzheimer's disease.

The inability to use all their faculties, to organize their mind, often leads to feelings of insecurity, fear, anger, and hostility among those suffering from Alzheimer's. You can think of this as being confused times 100.

Alzheimer's sufferers live in a near constant state of confusion caused by the brains inability to sort out stimuli. I sometimes think of this like a brain that is cracked. The brain still works but it can no longer do all the things it once did.

I am saddened when I hear these words --this is not the person I knew -- because those words objectify the person suffering from Alzheimer's. When you objectify a person you also dehumanize them. Once dehumanized the person becomes a villain.

Objectification leads to vilification. Vilification leads to dehumanization. This same cause and effect becomes a road block to effective caregiving. A kind of insurmountable brick wall that stops the caregiver from overcoming denial and becoming an effective loving, caring, caregiver.

A caregiver might believe that Alzheimer's is the villain, but if their behavior becomes one of objectification it is likely that the sufferer becomes the recipient of the anger -- the villain. Once this occurs the communication takes on a negative pattern that is hard to change.

Imagine two angry people. Imagine what they might say, or feel. Imagine if they somehow continued to live together year after year in a constant state of anger, in a constant state of conflict. Imagine.

In order to communicate effectively with a person suffering from Alzheimer's disease you need to come to an understanding that they are now living in a new world -- I often refer to this as Alzheimer's world. The person suffering from Alzheimer's did not choose to go into this new and bizarre world. They are not acting irrational by design or with intent. They are acting irrational because their brain is not functioning properly. This is being caused by the Alzheimer's disease.

It is very difficult as an Alzheimer's caregiver to understand and accept that the behavior of a person suffering from Alzheimer's is a direct result of the progression of the disease. The person expressing these behaviors is the same person you have known throughout your life.

Alzheimer's caregiving at its core is all about change and acceptance. Most people have trouble dealing with change. The change that comes with Alzheimer's disease is so dramatic and so enormous that it takes a long time to digest and understand. It takes years to become comfortable with Alzheimer's.

Objectifying the Alzheimer's sufferer brings a sense of understanding of Alzheimer's disease. It allows some caregivers to cope. It is their way of coping.

Objectification brings with it an enormous amount of pain. It is likely that this pain will remain with the caregiver throughout their life. It is likely they will remain "mad" at Alzheimer's for ruining their life.

Is there a solution to this problem? I believe there is.

First, you need to come to the realization that the person suffering from Alzheimer's is the person you knew throughout your life.

You'll need to accept that the behaviors you are seeing are a direct effect of illness -- Alzheimer's disease.

You'll need to develop a new set of communication skills that will allow you to deal with the behavior of the person suffering from Alzheimer's, and at the same time allow you to slay the dragon within you.

Alzheimer's is a sinister disease. It kills brains. It will kill the brain of the person suffering from Alzheimer's. It will also try to kill the brain of the Alzheimer's caregiver.

My mother is still the same person I have known all my life. She suffers from Alzheimer's disease. Her brain sends her the wrong signal quite often. So its up to me to let her use my brain when necessary. This is what I do. It works.

Next time I'll try to suggest some ways to get over the brick wall that can separate you from someone suffering from Alzheimer's disease.

You'll be pleasantly surprised to learn that they are the person you always new. And this is the biggest surprise of all -- you'll be the person you always knew and therein lies the solution to the problem.

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Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. The Alzheimer's Reading Room is the number one website on the Internet for news, advice, and insight into Alzheimer's disease. Bob has written more than 950 articles with more than 8,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, Alzheimer's Reading Room

How Little We Know: The Challenges of Financial Reform

Good read.

To read this article --go here.

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Original content Bob DeMarco, All American Investor

Happy Thanksgiving to All

Happy Thanksgiving.

Bob

Original content Bob DeMarco, Alzheimer's Reading Room

60 Minutes The Cost of Dying (Video and Transcript)

"Families cannot imagine there could be anything worse than their loved one dying. But in fact, there are things worse....Most generally, it's having someone you love die badly, suffering, dying connected to machines." -- Dr. Ira Byock, Dartmouth-Hitchcock Medical Center....

Last year, Medicare paid $50 billion just for doctor and hospital bills during the last two months of patients' lives. That's more than the budget of the Department of Homeland Security or the Department of Education. And it has been estimated that 20 to 30 percent of these medical expenditures may have had no meaningful impact.

The vast majority of people say they want to die at home, but 75 percent die in a hospital or nursing home. Many Americans spend their last days in an ICU, subjected to uncomfortable machines or surgeries to prolong their lives.

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To read the transcript go here.

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Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. The Alzheimer's Reading Room is the number one website on the Internet for news, advice, and insight into Alzheimer's disease. Bob has written more than 950 articles with more than 8,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, Alzheimer's Reading Room

Worried About Alzheimer's Disease ?

Regardless of age, you should be worried about Alzheimer's disease.....

Worried About Alzheimer's? You Should Be
Regardless of age, you should be worried about Alzheimer's disease. A Harris Interactive poll showed that 100 million Americans are touched by Alzheimer's. The same poll showed that more than 33 million Americans are worried about getting Alzheimer's.
To continue reading -- go here.

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Worried About Alzheimer's? Tip #1 Exercise
If exercise can have this kind of dramatic effect on my mother who already suffers from Alzheimer's, you really need to start wondering to yourself -- is this the way to beat or delay the onset of Alzheimer's disease?
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Worried about Alzheimer's? If You are a Baby Boomer You Should Be
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Worried About Alzheimer's? Nintendo Wii Hula Hoop
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Original content Bob DeMarco, Alzheimer's Reading Room

How To Beat Alzheimer's Incontinence

We are on a three day roll. No pee pee. No pee pee pajamas. No pee pee underwear. No pee pee pants......

Bob DeMarco
Alzheimer's Reading Room
Editor


My mother suffered from urinary incontinence long before I moved to Delray Beach to take care of her.

My sister Joanne was the first to notice the problem -- 8 or 9 years ago.

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________________________________
Urinary Incontinence (UI) is a stigmatized, underreported, under-diagnosed, under-treated condition that is erroneously thought to be a normal part of aging. One-third of men and women ages 30-70 believe that incontinence is a part of aging (National Institute of Health, NIH).

You could put everything I knew about urinary incontinence in a thimble before I started to focus on this problem. Reading and learning about the problem helped me come to the conclusion that we could do something about it. A little education is always helpful.
________________________________
I want to make something clear. I did not arrive at this current solution to urinary incontinence over night. It took years.

Once we finally developed the current solution, it still took many months before it started to work effectively. Here is some good news. The solution is becoming more and more effective over time.

My solution is not perfect. It does not work every single day. It does not work every single night. I can say this with some confidence -- we no longer experience the flood. Now its more like the little tiny accident.

When we have a problem with incontinence during the day it usually happens because I am tardy or less than perfect in following the program.

If you decide to try this, it is going to be a lot of work. You will need to tailor my solution to fit you own needs or you own Alzheimer's sufferer.

If you are not ready to give this program everything you have to give -- you will likely end up frustrated, or quit.

If you make this work you will end up with a wonderful feeling of accomplishment, and frankly, keep more of your hair.
________________________________
If you really want to solve the problem of urinary incontinence, I suggest you try a little role reversal.

If you were the one with Alzheimer's and urinary incontinence, how would you want to be treated?

Would you want to be yelled at? Treated like a baby? Would you want to listen to someone constantly complain about how you are peeing all over yourself?

Would you want to feel all those bad vibes being directed at you?
________________________________
I tried many times to do something about incontinence over the years. All false starts. I gave up every time.

Finally, the problem was so bad that we were using 14 sets of pajamas and 24 panties. My mother was blowing through 3 pajama bottoms a night. Day time, same story with her cloths.

All I can say is, that is a lot of wash.
________________________________
My mother was suffering from incontinence from day one.

I turned to everyone I knew. I listened to their ideas and advice. I turned to women of all ages.

Most of the advice centered around two solutions -- pads and adult diapers.

I have to laugh at myself now as I remember my first trip to the store. I figured I would go in and grab what I needed and get on with the task at hand. Keep in mind I am a man.

Well the aisle that contained these products in Walmart was gigantic. It just went on and on. I think I spent more than 30 minutes trying to figure out which might work for the problem at hand.

In a way, it was mesmerizing. Oddly, since I am a curious person it was interesting to me. Later I thought to myself, wow, this is one big problem.
________________________________
I decided to try the adult diapers. At the mention of this, my mother pitched a fit.

I would get here to put the diaper on grudgingly. As soon as I wasn't looking she would take the diaper off.

If you are an Alzheimer's caregiver you can already imagine the things she was saying. Some of them not very nice.

Let me tell you what I was accomplishing -- I was making my mother miserable and mean. This in turn was making me miserable. The dreaded stomach ache.

Here is what I started to learn.

My mother did not believe there was a problem. It was embarrassing to wear a diaper. It was a sign of old age. If she didn't think there was a problem she would never accept the solution to the problem.

I thought to myself, well if there wasn't a problem I wouldn't wear a diaper either.

I gave up.
________________________________
Here we were again. 14 pair of pajamas, 24 undies.

Now I decided to try the pads, the inserts. I thought I had a new idea that would work.

I convinced my mother's elderly friends to talk to my mother and tell her how they used the inserts, pads, and diapers. How it was a normal part of getting old. I coached them to be very enthusiastic and tell her how great this solution worked. I asked them to smile and laugh all the way.

My mother listened -- in went the pad.

They went home and out came the pad. I know they say that the person suffering from Alzheimer's will eventually get use to the pads and every thing will be beautiful.

I tried and I tried and I tried. I gave up.
________________________________
I don't know why I didn't think of this sooner but I finally decided it was time for a trip into the Alzheimer's bunkhouse. I took my big newspaper pad with me and wrote -- problem incontinence -- right in the middle of the page with a big circle around it.

Then I started writing everything I could think of and remember about this problem all around that circle.

Then like magic like the light bulb went on in my head. I thought to myself, if I can do this I'll be like the Leonardo da Vinci of urinary incontinence (I'm Italian by the way).

To continue reading -- go here.

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Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. The Alzheimer's Reading Room is the number one website on the Internet for news, advice, and insight into Alzheimer's disease. Bob has written more than 950 articles with more than 8,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, Alzheimer's Reading Room

Which Drugs Increase the Risk of Falling for the Elderly

Bob DeMarco
Alzheimer's Reading Room
Editor

Falls are the leading cause of both fatal and nonfatal injuries for adults sixty-five and older, and research suggests that those taking four or more medications are at an even greater risk than those who don’t—perhaps two to three times greater. -- Susan Blalock, UNC Eshelman School of Pharmacy.....

I am always worried that my mother might fall and injure herself -- or worse.

Research studies indicate that falling is a leading cause of injury deaths for people 65 and older -- see Falls Among Older Adults: An Overview.

• More than one third of adults 65 and older fall each year in the United States
• Twenty percent to 30% of people who fall suffer moderate to severe injuries such as bruises, hip fractures, or head traumas.
• Men are more likely to die from a fall.
• The risk of being seriously injured in a fall increases with age.
• People 75 and older who fall are four to five times more likely to be admitted to a long-term care facility for a year or longer.

The drugs older people take can make them more susceptible to falling.

Have you considered these facts? Asked your personal care physician if the drugs he or she is prescribing increase the chances of falling? Ever had a pharmacist warm you that a drug can increase the chances of falling?

When you are getting a prescription filled has the pharmacist every told you -- be careful this drug can increase falling?

Stefanie Ferreri offered the following advice to patients and practitioners:

For Patients
If patients see a drug they are taking on the list, they should not stop taking it. Next time they see their doctor, talk about the risk of falling and possible alternative medications.

For Doctors
Physicians should look for medications that have been proven safe and effective in older adults and look for medicines that have less of a sedating effect. Physicians should be especially wary of anticholinergics, a class of drugs that affect nerve cells and used to treat a wide range of conditions.

For Pharmacists
Pharmacists should be alert for patients sixty-five and older who are taking four or more drugs and be sure the patients know about the additional risk of falling created by their medications.

Here are some popular drugs that are on the list Celexa, Effexor, Wellbutrin, Prozac and Risperdal.

Please consider sharing this information with family and friends. Or your doctor.

Go here to see -- Prescription medications that increase the risk of falls for patients 65 and older.

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Original content Bob DeMarco, Alzheimer's Reading Room

Simple Tests to Detect Alzheimer's and Dementia the Old Fashioned Way

In my little world here in Delray Beach, Florida I have learned a harsh lesson -- it is very difficult to diagnose mild cognitive impairment, dementia, and probable Alzheimer's. Here are some simple tests for Alzheimer's and dementia that could be helpful......

Bob DeMarco
Alzheimer's Reading Room
Editor


I knew something was wrong with my mother. I knew it. When I would mention some of my concerns to family and friends they would usually conclude -- she is getting old. When it first started to really bother me my mother was 86 years old.

Her friends that saw her everyday would tell me she is doing great. Her doctor of six years didn't see a problem.

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I did know her behavior was undergoing subtle changes. She talked about money incessantly, she complained about being bored incessantly. She started scrapping her feet on the ground. She said things that lead me to believe she was feeling insecure, maybe fear -- these were very different than what I heard her saying in the past.

After my mother was diagnosed with dementia her friends refused to believe both the diagnosis and me. When she would talk to family and friends that lived far away they would usually say --she sounds great.

She did sound great. She could still drive, go to the store, and play bingo. What they didn't see was how her behavior would often turn erratic. I invited all of them to come live in the front row for a few days -- they passed.

____________________________
The time came when I decided to come and spend some extended time with my mother and try to find out what was happening. At the time, you could put everything I knew about Alzheimer's and dementia in a thimble.

It took a few months before I finally started to understand the problem. It took four doctors to get to the bottom of the problem. None of the people that were seeing my mother on a daily basis saw a problem.

People in an early stage of dementia are very good at disguising the problem. They can laugh and change the conversation when you ask them questions about memory, or the ability to go here and go there. For me, it was the changes in behavior, the meanness, and the inability to walk more than a block that tipped me off.

____________________________
If a person suffering from dementia gets lost or starts having problems driving, you will never hear about it. The last thing an elderly person wants to do is lose their independence. One of the biggest symbols of independence is the drivers license. Trying to get that drivers license is like trying to get a steak out of the mouth of a bull dog.

____________________________
After I had been hear a couple of years, I learned some interesting things about my mothers behavior.

She drove her car over a concrete abutment, through a hedge and hit a tree. She then drove the car around some trees, over a sidewalk, over the lawn, and put the care in her condominium parking space. She didn't tell me, my brother, or my sister.

When I first learned about this her friends were laughing telling the story. They were impressed by the fact that she actually got the car back into her space. They did not see it as an indication that maybe she shouldn't be driving -- or worse.

Her friends, still friends, also forgot to mention that they stopped inviting my mother to their lunch time outings to restaurants because she constantly complained about money. When I asked them years later, when I first learned about this, if she had always done this -- they said no. In other words, her behavior had clearly changed but it had no impact on their view of her health.

____________________________
If you live far away from your parent and they are over 80, there is a good chance you could end up in the same situation I found myself in six years ago.

Here are few things you can try to spot mild cognitive impairment, Alzheimer's or dementia at an early stage.

To continue reading -- go here.

Unemployed for 27 Weeks or Longer Still High(Graph)

5,594,000 versus 2,275,000 a year ago. In October, 35.6 percent of unemployed persons were jobless for 27 weeks or more.

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Bob DeMarco is a citizen journalist and twenty year Wall Street veteran. Bob has written more than 950 articles with more than 8,000 links to his work on the Internet. Content from All American Investor has been syndicated on Reuters, the Wall Street Journal, Fox News, Pluck, Blog Critics, and a growing list of newspaper websites. Bob is actively seeking syndication and writing assignments.

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Original content Bob DeMarco, All American Investor

Techniques for Communicating with People with Alzheimer's and Dementia

If you live with or care for someone with Alzheimer's or dementia, you should consider reading this book. The Validation Breakthrough will help you understand why Alzheimer's sufferers say what they say and do what they do. This book helps you understand communication that is often difficult to accept and hard to interpret.

You might get the impression from the title that this book is only for professionals -- this is not the case. The validation theory works and it is simple to apply.

The case studies are invaluable and provide you with specific situations that you are sure to encounter.

I am convinced everyone involved with elderly parents suffering from dementia or Alzheimer's will benefit from reading this book.

You will certainly reduce stress by learning these techniques.


The Validation Breakthrough: Simple Techniques for Communicating with People with Alzheimer's Type Dementia

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Reviews

By Martine Davis

If you live with or care for someone with Alzheimer's or other age related dementia, you must read this book ! What an eye-opener! For the first time I finally understood why Alzheimer's patient say what they say and do what they do. It all makes so much sense now. This small book reads quickly and is full of examples of real people who have been helped with the author's techniques. It shows you how to handle the blaming, accusing, name-calling and the repetitive motions ... It also explains why the way most of us react to Alzheimer's patients actions actually worsens the situation and can cause them to progress to a more advanced stage of Alzheimer's disease ! This book could extend the relationship between the patient and caregivers and should be MANDATORY reading for all staff working in nursing homes and long-term care facilities !

By J. Summers, CNA (Alaska)

An excellent book for both the professional caregiver and families trying to deal with this sometimes unfathomable disease. Gives practical ideas and techniques for helping people with dementia deal with issues from paranoia and blaming to sadness and helplessness. I have just begun to explore these techniques and am finding they work so well that they should be mandatory training for nurses, PCAs and CNAs. Instead of treating our seniors like they are children we at last have a way to talk to them on an adult level, tap into where they are at, deal with the problem at hand and we all come out better for the experience.


Reviewer: A reader

More and more relevant as we care for aging parents. With a title like this one might think: "Boring" Absolutely not so! Right from the start, the stories of the people are so real and so touching that one of my friends said she was moved to tears. She was so sad not to have known about this way of relating to her father. "It works," she told me. "Validation Breakthrough" shows a new way of relating to people with dementia of Alzheimer's type. This approach is effective in helping the person to clear up unresolved issues in their lives. You do not have to be a professionally trained therapist to use validation. Validation will make the relationship more rewarding for both people. It is not hard to learn and makes wonderful sense. Some readers may want to ask new questions of care facilities (like nursing homes) as the validation approach will keep loved ones from slipping into a vegetative state. It will also make the care much kinder, and more rewarding for the care givers


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Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. The Alzheimer's Reading Room is the number one website on the Internet for news, advice, and insight into Alzheimer's disease. Bob has written more than 950 articles with more than 8,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, Alzheimer's Reading Room

H1N1 Flu Virus Everything You Need to Know

clipped from www.alzheimersreadingroom.com H1N1 Flu virus activity is now widespread in 46 states. Nationwide, visits to doctors for influenza-like-illness are increasing sharply, and are now higher than what is usually seen at the peak of the flu seasons....... The 2009 H1N1 (Swine Flu) is a new influenza virus causing illness in people. This new virus was first detected in the United States in April 2009. This virus is spreading from person-to-person worldwide, probably in much the same way that regular seasonal influenza viruses spread. On June 11, 2009, the World Health Organization (WHO) signaled that a pandemic of 2009 H1N1 flu was underway.

Read More....