Alzheimer's Reading Room

Alzheimer's: Mom Didn't Laugh for Two Years and it was Killing Me

2010-02-08T13:46:00.006-05:00

My mother, Dorothy, did not laugh for over two years. It was "killing" me....

By Bob DeMarco

Max wrote about the last great big laugh he heard from his Great Grams. It was obviously vivid in his mind. See The Plaid Pajamas and the Last Big Laugh.

This reminded me of one of the saddest periods in my life. My mother didn't laugh for over two years. She rarely smiled during this period. Severe heartache, it hurt.

I would look over and there would be mom. The glassy eyed look, the stare into what must be either confusion or "nowhere". The look of Alzheimer's and dementia.

Then the day came. I picked up the bible, the Alzheimer's Action Plan, and I started reading through some of the pages I had dog eared. Page 82, The Less Than Trusty Thyroid. I read,

"Get your thyroid tested. Nearly one in five people over the age of sixty has some degree of hypothyroidism, meaning a sluggish thyroid. The sympotms include forgetfulness, weight gain, depression, dry skin, intolerance to cold, muscle aches, and fatigue. People who are hypothyroid feel as though they have mild Alzheimer's and depression all mixed into one bad day."

My mother had five of the seven symptoms listed above.

I took out my doctor's notebook. The notebook I use to keep track of everything that goes on with my mother from day to day. The headaches, her temperature, complaints, attitude -- I call this part the diary. I made a note in the doctor's section to bring up hypothyroidism to our personal care physician. I did just that at the end of our next doctor's appointment.

Dr. Chiriboga was wonderful. He didn't give me the doctor look and talk, "what you read a book and now you are a doctor." He didn't act like I was questioning his capability. He listened and said, "lets check her thyroid". Blood test.

Seven days later we were back in the doctor's office and he said -- "the results look suspicious." She didn't actually test positive for hypothyroidism, but the result was just barely above the level defined as hypothyroidism. He then proceeded to tell me how we were going to take a cautious approach. He gave me all the caveats, prescribed the mildest dosage of thyroid medication, and told me we would test her blood in a month to make sure we didn't give her hyperthyroidism with the medication.

A couple of days later my mother laughed. I jumped up when I heard the laugh. I ran over to find out what was going on. Seinfeld, Kramer. Kramer made my mother laugh. I was so elated I felt like I could fly. Soar.

From that point on things just got better and better. My mother not only started laughing, she started smiling. She actually thanked me when I cooked for her. When I asked how food tasted she actually gave me a review rather than the standard --OK.

This development lead to my decision to find a way to get her out into the light, to get her into restaurants, to get her socialized. The more we did the better her life. The better my life.

Believe it or not, it was not unusual for us to go out at 6 PM and come home after 11 PM. My mother was the one that wanted to stay out. She had more energy and more LIFE.

Ok, advice and lecture time.

Get the thyroid checked. By the way, if your loved one has too much energy it could be hyperthyroidism. If they are dull, depressed and lacking in any kind of emotion, it could be hypothyroidism.

Now you might not get a miracle like we did, but it is worth the effort. Feel free to take this article with you to the doctor. If he refuses to give you this simple, cheap blood test -- go get yourself a competent doctor. Please note: not all personal care physicians routinely include the hypothyroidism panel then they send an elderly person for a blood test. Additionally, they might not check the numbers if a red flag doesn't come up with the test results. Like I mentioned, our doctor described the test result as -- "suspicious".

Now when I look at my mother and she has that glassy eyed stare into what must be either confusion or "nowhere" -- it makes my heart feel warm. Why? Because I learned by taking action -- "More there."

Instead of heartache, I get that warm, fuzzy feeling.

Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

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Reader Comments Put Me In Focus and the Guru Energizes Me

2010-02-08T10:21:00.002-05:00

Two heads are better than one. Soon we will have 2,000 heads. I call this the "collective brain" of the Alzheimer's Reading Room....

By Bob DeMarco

On Saturday I wrote A Virtual Alzheimer's Support Group. The article was about my goal to promote more interaction in the comments box below the articles.

I received several excellent comments from readers on how this might be accomplished. I replied to each of those comments under the original article.

One of the best comments was about the location of the comments box. I moved the comments box up so that it is easier to find. We will see what happens.

I did receive a lot of encouragement about my idea of trying to create a virtual support group. In addition to the comments, I received 11 private emails. I believe this is wanted. I might take this concept on to Blog Talk Radio.

I'll try something soon and see how it goes. I am considering starting a weekly feature where readers ask the questions, and then we "bat them around in the comments section." We could then turn the feedback into an article that would be easier to read and review. I am open to suggestions and advice.

I'll try to figure out how to get more readers to suggest topics.

Back to the feedback, this came in the form of a private email. We have an "Internet guru" that comes to this website for an obvious reason -- touched by Alzheimer's.

Here is what I learned. First, in fact this website has a very high level of reader interaction. While the raw number of comments appears low, in fact it is high based on the number of visitors and page views. I guess you could say, I was comparing the number of comments to websites that are much larger than the Alzheimer's Reading Room and that have been in business longer.

The guru went on to point out that I should be comparing an apple to an apple.

A different reader mentioned a larger website that seems to have more interaction. In fact, that website received $5 million in venture capital funding, and has 12 times as much content. Their ratio of comments to readers/page views is less than one fourth of what we have here on the Alzheimer's Reading Room. They are bigger and well funded, they are not more interactive based on this metric.

So while 12 comments is more than 8 comments, when compared to the number of visitors/page views as a ratio -- 8 is more.

The guru also mentioned that the Alzheimer's Reading Room is 475% bigger than the average of comparable websites in our Google benchmark. Google establishes the benchmark, not me. I did know this by the way. Thanks to all of you for reading.

We are much higher in every category with one exception -- pages visits per unique reader. The guru informed me that all I needed to do was publish twice as many articles a day, and this would reverse itself. In other words, if we had more to read each day it is likely that a fraction of the readers would read more pages and the number would go up.

The bottom line. I was a little disappointed when I wrote about the number of comments. But, now that I understand the facts and dynamic, I am extremely happy and re-energized.

Having said all of the above, I want to make one thing clear -- this is about the readers. Without you this place would not exist. Pretty simple when you think about it.

The result of this endeavor taught me this:

We do need to try and incorporate a group support feature into the Alzheimer's Reading Room.
I need to find a better way to make the existing articles available to new readers that come into the Alzheimer's Reading Room. A table of contents won't work. There are almost 1200 articles. We have a search box which is designed to help readers find information.
What I need to do is break the articles down into categories, and then get them over on to the sidebar as topics. For example, if we had a topic named "Incontinence" and a reader wanted information on incontinence they could click on the link and get everything we have. One click to all the information on a given topic (this comes directly from a reader suggestion).
I need to improve the way the website can be navigated.
I need to unleash the "collective brain" of the Alzheimer's Reading Room as I have promised to do many times.
I'll accomplish this by bringing on more writer/contributors, I'll have them share their experiences and advice with us. Let me make this clear, these newbies are people that are already contributing to the success of the Alzheimer's Reading Room. It is not my intention to recruit anyone that is outside the "collective brain". I will leverage our "collective brain" now.

I learn daily from existing readers that have vast amounts of life experience outside my own frame of reference. Its time for me to try and unleash that experience and bring it on to the Alzheimer's Reading Room. I email existing readers all the time for advice. I use this advice to answers email requests that are beyond my own "frame of reference". I now understand that I should have been publishing their emails as free standing articles. The advice is often exceptional.

This does mean more content and change on the Alzheimer's Reading Room. I understand some readers won't like this. I also understand that I can't expect every single article to be a home run, or useful to every single reader. When I read a magazine I only read the articles that are of interest to me. I want the information I read, and I try to put it to good use.

I believe that from time to time we will get that "home run" article that really is helpful to readers -- both stay at home caregivers and experts in the "field". More brains means more useful information, means more "home runs."

To be honest, I never know how readers are going to react to a given article. Sometimes, I write an article that I think is fantastic and important -- result, nothing happens. Other times, I write something that I am not really happy with and the comments box explodes. Go figure.

The above means I still have a lot to learn, and learn I will.

So, I hope you'll stay as we makes some changes. I'll do the best I can to make good decisions. I'll continue to ask the readers for help and advice.

Two heads are better than one. Soon we will have 2,000 heads. And that my friends equals the "collective brain" of the Alzheimer's Reading Room.

Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

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Original content Bob DeMarco, the Alzheimer's Reading Room

The Plaid Pajamas and the Last Big Laugh

2010-02-07T09:27:00.001-05:00

It was the last time I heard that laugh. Maybe it was the colorful plaids. Maybe it was how ridiculous Grandpa looked. Maybe it was because we all thought it was funny and she shared our emotions.....

By Max Wallack

In an article in the Vancouver Sun, Douglas Todd contemplates on how his mother picks up on and reflects his emotional state. He decides that the best thing he can do for his mom is to stay in a good mood.

Douglas Todd says,

“Since my mother’s own Self is so fragmented, she adopts the emotions of whomever is with her, especially if it is someone with whom she may possibly, unconsciously, remember is her son.”

Reading this made me remember the last time that I heard Great Grams laugh. I mean REALLY laugh.

Great Grams had always had a very jolly laugh. When she thought something was funny, and she started laughing, she almost couldn’t stop. Tears would come to her eyes, roll down her cheeks, and she would still be laughing. Sometimes, she would stop for a minute and then burst out laughing again.

Once dementia took hold of Great Grams, we didn’t hear that laugh very much anymore.

Then, one day there was a sale on pajamas at a nearby store. Grandma found some in Grandpa’s size for only $5, and they were the nice soft cotton flannel that he liked. She bought them.

Let me describe the pajamas a little further, and you will understand why they were $5. They were plaid – all different clashing plaids. The collar was one plaid, the left and right arms each a different plaid. The cuffs were of a different plaid. The bottoms were different plaid on each leg and the fronts of the legs were different plaid from the back. Even the pockets were different plaid patches. It was as if someone had used all the left over patches of plaid material to make these pajamas.

Try to imagine what the pajamas looked like.

That night, Grandpa put on his new wild and crazy pajamas and came downstairs. We all looked at him and started laughing. Great Grams was laughing the hardest. She was laughing her laugh of years before. She was laughing the laugh of who she really was.

It was the last time I heard that laugh. Maybe it was the colorful plaids. Maybe it was how ridiculous Grandpa looked. Maybe it was because we all thought it was funny and she shared our emotions.

I don’t know what it was, but it was a good day. I remember that is was a good time.

To read more of Douglas Todd’s article go here.

Max Wallack is a student at Boston University Academy. His great grandmother, Gertrude Finkelstein, suffered from Alzheimer's disease. Max is the founder of PUZZLES TO REMEMBER , a 501(c.)3 charitable organization. PUZZLES TO REMEMBER is a project that provides puzzles to nursing homes and other institutions that care for Alzheimer's and dementia patients.

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Artistic Endeavors Work Again for Patients Suffering from Dementia

2010-02-06T14:14:00.002-05:00

Dementia sufferers in Trowbridge are benefiting from a series of creative workshops using different techniques with wool.....

By Max Wallack

Alzheimer's and dementia patients take a four week course called the "Wonders of Wool" project. This group does various projects with the wool which all culminate in making a large wall hanging with many colors and textures. Meanwhile, the staff learns new skills which they then use with other patients.

In the words of Jenny Magne, the manager,

"Working with the textures and bright colours is therapeutic as well as enjoyable."

There seems to be a consistent and growing realization that art may be the best path to reach the Alzheimer's patient.

Stephany Bardzil, of Alzheimer’s Support, said:

“Working with different textiles and colours is something that can stimulate. Although people with dementia lose their short-term memory they can still remember feelings and emotions they have had.”

To read more go here.

Max Wallack is a student at Boston University Academy. His great grandmother, Gertrude Finkelstein, suffered from Alzheimer's disease. Max is the founder of PUZZLES TO REMEMBER , a 501(c.)3 charitable organization. PUZZLES TO REMEMBER is a project that provides puzzles to nursing homes and other institutions that care for Alzheimer's and dementia patients.

Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Max Wallack, the Alzheimer's Reading Room

A Virtual Alzheimer's Support Group

2010-02-06T09:34:00.002-05:00

....comments bring on another dimension--maybe validation -- Kerry Runyeon....

By Bob DeMarco

This year, one of my goals is to promote more interaction in the comments box below the articles. As the year goes on, I am hoping to see more back and forth between readers.

In order to accomplish this mission, I am going to need some advice from readers. Advice on how to best accomplish this mission.

I know that many of you attend support groups, and that many of you are, or have been support group moderators. Perhaps you have some ideas on how to promote interaction on this blog. If so, please use the comments box below this article and share your ideas. You are also welcome to email me directly.

It might be possible over time to broaden the scope of the Alzheimer's Reading Room by turning the blog into a "kind of" virtual support group. More like a "short burst" support that caregivers can use to help them get through a trying day, a trying period, or to get as Kerry Runyeon said -- some validation.

I am not trying to say that the Alzheimer's Reading Room is going to take the place of a full blown hour long support group session. What I envision is helping caregivers that are not currently attending a support group, or caregivers that are between meetings. I know from experience that almost everyday you need a little hope. Often this hope comes from someone that understands.

I know this is possible because the Alzheimer's Reading Room is my support group. I mean that I receive constant support and positive reinforcement from the readers of this blog.

I have an advantage over the typical reader because I receive lots of email. These emails remind me that I am not alone. Often they make me think. Often they make me feel. Often they encourage me. They encourage me not to give up. They make me want to find the solution to a problem. Not to let the problem drive me over the edge.

I receive emails from readers encouraging me, and sometimes praising me. I learned a long time ago, I little pat on the back goes a long way when you are having a difficult day. I believe this kind of encouragement kept me from throwing in the towel. That is my belief.

Collectively on this blog, we have lots of experienced, loving, caregivers. Each of these caregivers has a lot to offer. Most importantly, they have an empathy that can only be gained by living in the front row. An understanding.

We have lots of people on this blog that work with the elderly. Over the course of their experience they have seen problems that are common to us -- the readers, the caregivers. They have a lot to offer. Their experience provides a short cut to effective, loving, caregiving. It is lot easier to learn from the experience of another, then to learn by trial and error in the front row.

I need to find a way to unleash all of the above, and sooner or later I will.

Your comments and advice are welcome here. If you have an idea for a new feature, or if, you are willing to write from the perspective of a support moderator, or expert in the field, let me know.

Its time to broaden the purview of the Alzheimer's Reading Room. We have a much broader and more diverse readership then we had one year ago. The needs of this readership are broader. We have an opportunity to accomplish a great deal more than we have in the past.

In a real sense we are a virtual support group. All we need to do is find a way to organize. To do what we have been doing more effectively.

Imagine all the experiences we have -- Collectively. We have the vehicle to accomplish a great deal of good. What we need to do is figure out how to make it work effectively.

Its all part of the metamorphosis.

Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

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Original content Bob DeMarco, the Alzheimer's Reading Room

When the Saints Go Marching In....

2010-02-05T12:07:00.001-05:00

You probably think this is about the modern day Saints, the Alzheimer's caregivers....

By Bob DeMarco

Today, I jumped up out of my chair in front of the computer and ran in front of the television. Like most days, I had the Ellen show on for my mother.

The show began with a rousing rendition of When the Saints Go Marching In.

Oh when the saints go marching in
When the saints go marching in
Oh lord I want to be in that number
When the saints go marching in

I have been asked a few times this week, who do you want to win the Super Bowl?

First, I am a Philadelphia Eagles fan. Born and raised in Philly. As long as its not the Cowboys, Giants, or Redskins, I have to think about it. At heart, I am an NFC fan. So the team representing the NFC is usually my choice.

When the revelation (revolution) comes
When the revelation (revolution) comes
Oh lord I want to be in that number
When the saints go marching in

But this year, I am torn a bit. I like the Indianapolis Colts because Payton Manning is not only a great quarterback, he is a great role model. Clean living, wonderful positive attitude. In addition, head coach Jim Caldwell got his coaching start at Penn State. We Penn Staters have a natural affinity for one another.

We are traveling in the footsteps
Of those who've gone before
But we'll all be reunited (but if we stand reunited)
On a new and sunlit shore (then a new world is in store)

On the other hand, we have the New Orleans Saints. Drew Brees also clean living, positive attitude, great role model. The Saints have never been to the Super Bowl.

So my answer all week long has been -- doesn't matter to me two great teams.

When our leaders learn to cry
When our leaders learn to cry
Oh lord I want to be in that number
When the saints go marching in

Well, after hearing that rousing rendition of When the Saints Go Marching In on Ellen, I changed my mind.

There can be little doubt that a New Orleans Saints win will mean a great deal to New Orleans and the surrounding region. If only for a day or two, it will raise their spirits and fill them with a sense of hope.

So I made up my mind....Go Saints.

When the revelation (revolution) comes
When the revelation (revolution) comes
Oh lord I want to be in that number
When the saints go marching in

Who ya got?

Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

The Complete Eldercare Planner

Original content Bob DeMarco, the Alzheimer's Reading Room

No Wonder Alzheimer's Causes Emotional and Behavioral Changes!

2010-02-05T08:55:00.004-05:00

It seems that if the portion of our brain that deals with having to remember things is “busy”, then it is difficult to make rational decisions.....

By Max Wallack

The Head of School at Boston University Academy, Mr. Berkman, publishes a weekly message to all students and their families. Below is his message for this week:

Dear Academy Families,

Last week I heard a fascinating piece on WBUR about the brain. It seems that our short term memory can only hold about seven numbers (a phone number), so an experiment was conducted to determine how the use of memory can influence decision-making.

Each subject, individually and apart from any other, was told either two (easy) or seven (hard) numbers to remember, and asked to walk down the hall to another room where he or she would repeat those numbers. In the hallway, as if spontaneously, a woman would offer the subject a snack, asking if cake or fruit were preferred.

With enormous statistical clarity, the majority of two-number subjects chose fruit, and the majority of seven-number subjects chose cake!

The theory of what might have caused this clear division stems from the fact that our brain has two systems at war with each: one rational, one emotional. The rational brain understands the sins of cake and the merits of fruit, while the emotional brain just wants sugar and the sticky pleasure of cake.

When a subject was “burdened” with remembering seven numbers, the theorists posit, the rational brain was otherwise occupied when the snack question interrupted the walk down the hall, and therefore the emotional part of the brain won the (limited) internal debate and picked cake.

Those subjects with only two numbers to remember were more likely to have their rational brains win in favor of the healthy snack.

Who knew that humans can be so easily dislodged from making rational decisions – a mere seven numbers can disrupt our logical process and allow our emotional tendencies to take command! With proper daily training, however, I would suspect that we can overcome such an instinctive failing. At the Academy, we call this training homework.

Warm Regards,
James S. Berkman
Head of School

Wow, reading this message gave me sudden insight into the behavioral changes in Alzheimer’s disease!

It seems that if the portion of our brain that deals with having to remember things is “busy”, then it is difficult to make rational decisions. Doesn’t it make sense that it follows that if this memory area is defective, we get the same response – difficulty making rational decisions and the need for instant emotional gratification?

Thank you, Mr. Berkman, your letter helps me have an easier-to-understand image of what is going on in the brain of the Alzheimer’s patient.

Max Wallack is a student at Boston University Academy. His great grandmother, Gertrude Finkelstein, suffered from Alzheimer's disease. Max is the founder of PUZZLES TO REMEMBER , a 501(c.)3 charitable organization. PUZZLES TO REMEMBER is a project that provides puzzles to nursing homes and other institutions that care for Alzheimer's and dementia patients.

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Urinary Incontinence -- Follow Up with Kerry Runyeon

2010-02-04T20:04:00.002-05:00

We must have a few people reading this blog that have some new, different, or innovative ideas. I mean urinary incontinence can drive you nuts. So there must be some people on the attack and making headway.....

By Bob DeMarco

Before we get into urinary incontinence, I want to say a few words about Kerry Runyeon. Kerry has a great blog that is just full of life. I read her blogging because it makes me smile, makes me feel happy, and reminds me of the challenges of the Alzheimer's caregiver. Reminds me I am not alone, and that there are many many of us dealing with the same, or similar issues day in and day out.

Kerry writes with a smile. I often think to myself, I should try to do that more often.

Here is a recent example from Living in the moment with Lilybird -- Last Twelve Hours.

Today Kerry posted a comment below the article -- Conquering Urinary Incontinence -- The First Bladder Infection of the Year.

Here it is:

My problem with my mother at present is not daytime incontinence but nighttime. Does your mother stay dry all night? All your problems with the depends or pads remind why I don't think they will work with my mom. As of now I am going to try getting her up (around 11pm or midnight) and then again around 6:30am and see if that works. If not I may have to try the depends but feel I will have the same problems you experienced with that.

__________________________
Here is my response:

Kerry...

Great questions.

We have this king size bed that is actually two single mattresses on top. This is why I can respond to your question.

Occasionally, I get my mother to sleep on one side and I sleep on the other. I do this so I know what she is doing at night.

She still gets up once (rarely twice) a night and goes to the bathroom. Sometimes she does have a large volume. This surprises me. I make sure she goes right before she gets in bed. All of this still seems to amaze me. Mostly, that she gets up and goes.

Sometimes, we have nothing in the morning. Sometimes she throws her panties in the sink overnight and puts her pajama bottom back on. A few drops, minor problem. Usually only the panties gets wet. And, not really wet, damp maybe.

I also put out an extra pajama bottom on her bed at night. Sometimes she changes. She usually changes the bottom first thing in the morning.

I think the key is that I get her to go to the bathroom every two hours during the day. The goal is to establish a pattern. She does try to resist at times. But, I have that problem about 95 percent under control.

I spend a lot of time reminding her that when she has to go -- it is too late. I am not saying she remembers this, but I think it is possible that the pattern gets established in another part of her brain. Can't really say for sure, but I believe in patterns.

I have tried everything you could imagine on the depends, etc. They come right off. They claim that some sufferers will get use to them. Not yet in our case.

This might be the difference. My mother doesn't go to bed until 11 PM. Sometimes she gets up around 7 30 AM. I try and be quiet, but if she hears me in the morning she gets up. Immediate trip to the bathroom no matter what times she gets up.

My mother and I have some kind of we don't need much sleep gene. Mom use to go to bed past midnight and get up around 6 AM. I rarely sleep more than seven hours.

My mother does sleep well and soundly at night since we added Clonindine -- it knocks her out. When she gets up at night, she gets right back in bed and goes right back to sleep. Knock on wood, it was not always this way.

I think if you can get your mother up early it could help. My guess is if they don't think I have to pee, they can make it to the bathroom in the morning. Again, I have no idea if that is true but it seems likely it to me.

I get my mother to pee around 9 PM and before she gets in bed.

In our case here is the good news. Not one drop of pee in the bed or on the sheet. I check everyday. I also check the pad.

Who knows what the future will bring?

If you come up with any solutions please let us know.

I read your blog and I know you have a great positive attitude. Get positive, think positive, and will it to happen. Might sound crazy, but I think you can do it.

I often put my head on my mother's head and tell her I am lending her my brain. I also try and shoot some silent messages in at the same time.

Guess it sounds crazy, but here is one thing I know for sure. It can't hurt.

Bob
__________________________
Now I have been thinking about my response and I don't know if it is helpful or not.

We must have a few people reading this blog that have some new, different, or innovative ideas. I mean urinary incontinence can drive you nuts. So there must be some people on the attack and making headway.

Got something? Anything? Shoot it into the comments box.

I think I have to get a little man logo where he is scratching his head.

Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

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Conquering Urinary Incontinence -- The First Bladder Infection of the Year

2010-02-04T10:34:00.006-05:00

Last year my mother had five bladder infections. This is a common occurrence amongst people suffering from Alzheimer's disease and dementia....

By Bob DeMarco

Beginning in 2008, I came upon a solution that not only allowed me to detect my mother's frequent bladder infections, it also allowed us to cut down her urinary incontinence to near zero.

In 2008, I made a simple observation, my mother seemed to be warmer when I held her hand. I also noticed that she seemed to be perspiring a bit.

At the end of one of her regular doctor appointment I brought this up to our personal care physician Dr. Carlos Chiriboga. He decided to test her for a bladder infection and hydration right on the spot.

Hydration no problem. She did have a urinary tract infection. In my discussion with the doctor, I learned that is was possible to have a bladder infection without pain. I now refer to this as the silent bladder infection.

Prior to this new understanding, I was under the impression that when a woman had a urinary track infection she would experience pain, or have an irresistible urge to pee all day long. I learned that older women knew immediately from the symptoms that they had a urinary infection.

When I learned that it was possible to have a bladder infection without the typical symptoms I started to discuss this with my sister and other women. Most of them were surprised to learn what I was learning.

On top of the above, it is now impossible for my mother, who suffers from Alzheimer's disease, to tell me when she is sick, feeling pain, or when she has a headache. I usually notice these symptoms from her non-verbal behavior before she tells me. For example, if she starts rubbing her head I have to ask, do you have a headache? Most times she will say something like, I am OK. After I ask her the same question a few times, very gently, she tells me she has a headache and where it is located.

My mother has never once told me she has a urinary track infection. In fact, if you ask her right now she will tell you she never had one. On top of that, if you ask her if she has incontinence she will tell you no. NO pee pee pajamas, no pee pee underwear, no pee pee pants.

I should interject, my mother was suffering from incontinence since 2000. I know this because she started to have "accidents" in public places. The flood.
_____________________
After I had the experience I described above with our doctor, I started to wonder why a doctor didn't detect my mother's bladder infections with ease. It soon dawned on me why.

My mother's normal body temperature is 97.6 to 97.8.

So, when she went for her typical three month check up and they took her temperature at the doctor's office they would not detect a problem when my mother's temperature was 98.4. This is part one of the solution.

I started taking my mother's temperature every day or two. Sure enough, once her temperature reached 98.4 she had a bladder infection. Every time. Five times last year and once already this year in January.

So here is my first piece of advice. If your loved one is suffering from urinary incontinence start taking their temperature and establish a baseline temperature. It is not unusual for an older person, suffering from dementia, to have a body temperature well below the commonly recognized 98.6.

If you are experiencing the dreaded pee pee underwear, pee pee pajamas, or pee pee bed, get on the stick. Get the baseline temperature established and get rid of the silent bladder infection.
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Here is something you might find interesting. This last time around within hours of getting the 98.4 temperature reading we had the flood. The big dreaded pee pee flood in the sky. I already thought my mother had the bladder infection and this "event" convinced me it would prove to be true. Unfortunately, it was Saturday and we couldn't do anything about it until Monday.

As a sidenote. It use to "piss" me off (lol, pun) when I would try to tell the woman on the phone that I needed to see the doctor because my mother has a bladder infection. Usually, they want an explanation of how you know this. Of course, when I explain the 98.4 they automatically assume I don't know what I am talking about. I say this use to bother me, no more. I am use to the drill, and I am confident in my diagnosis. I know I am not a doctor -- I am an observer of patterns. And there in lies the solution, look for patterns.
_____________________
In November, 2009 I finally got around to writing -- Urinary Incontinence -- How We Beat Alzheimer's Incontinence -- The Solution. Well now, I am feeling a lot more confident, probably cocky, so I am not afraid to use the word - conquered.

Conquering urinary incontinence requires two things. The first I already described above. Establishing the body temperature baseline, and catching the silent bladder infection and killing it.

The second thing you need to do is to establish a pattern of pee-peeing. In other words, you have to incorporate the scheduled pee pee into your own already established pattern of behavior.

I describe how I did this in Urinary Incontinence -- How We Beat Alzheimer's Incontinence -- The Solution.

The bottom line is this. I have to make sure my mother pee pee's every two hours. Of course, she says all the time, I don't need to pee pee. I sometimes try to explain to her in a very low calm voice, when you have to pee pee its too late. To be honest, I have all kinds of things I say, in a calm low voice, to get her to pee. Things like, come on, its time to pee and then you'll have a snack. Come on, its time to pee pee and then we will eat. Come on, its time to pee pee and then we will go out and have some fun.

I say all these things to my mother not because I believe she will remember them, but because I want to establish a pattern of behavior.

If you got this far consider this. No pee pee in the bed. None. No need to change the sheets. My mother does not wear diapers, or for people that find that word objectionable -- briefs, depends, or socks.

Sometimes a little pee pee in the pajamas. Sometimes a little pee in the panties or pants. Often-- NO pee pee.

This is my belief. If I don't get my mother to pee pee at least once every two hours, and she pee pees on herself that pee pee is on me.

One of these days I am will get around to writing the Magic Poop Solution. Yeah, I conquered that problem also. It only took around four years to figure that one out.

Feel free to share this article by emailing a friend or caregiver that is going nuts with the dreaded pee pee. Somebody push this up to Stumble Upon, Digg, and Facebook. Use the share button at the top of this article.

Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

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Original content Bob DeMarco, the Alzheimer's Reading Room

The Live Until 100 Super Pill

2010-02-03T19:56:00.000-05:00

By Max Wallack

The Live Until 100 Super Pill

Dr. Barzilai, a geneticist at the Albert Einstein College of Medicine says that three genes have been identified that are the key to longevity. People who have these three genes are 80% less likely to get Alzheimer’s disease or Diabetes.

Several laboratories are already trying to make a pill that will mimic these genes. Here is the article:

http://www.dailymail.co.uk/news/article-1248035/Super-pill-eliminate-diabetes-Alzheimers-heart-disease-ready-years.html

Dr. Barzilai will present his ideas on BBC2’s Horizon tonight at 9pm.

Max Wallack is a student at Boston University Academy. His great grandmother, Gertrude Finkelstein, suffered from Alzheimer's disease. Max is the founder of PUZZLES TO REMEMBER , a 501(c.)3 charitable organization. PUZZLES TO REMEMBER is a project that provides puzzles to nursing homes and other institutions that care for Alzheimer's and dementia patients.

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Original content Max Wallack, the Alzheimer's Reading Room

Alzheimer's "More There"

2010-02-03T14:56:00.002-05:00

Thanks to some good advice at the right time and some positive reinforcement I soon started learning there was "more there".....

By Bob DeMarco

In his article, "I Remember Better When I Paint", Max Wallack stopped me dead in my tracks when I read these two words -- "more there." He managed to give me a new perspective on something I have been thinking about and trying to do for years.

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I consider myself fortunate because I learned early on to let my mother do every thing she could do. More importantly, to stop doing everything for her. Frankly, doing it for her was easier. This was important advice -- let her do it.

If I had not learned this lesson, I now believe that my mother would be doing next to nothing. I say this because I learned if you do it for them, sooner or later they will forget how to do things. Once they forget, they will never relearn.

Right before I learned this important lesson, I believed we were at the beginning of the end. I believed my mother was going right over the edge. That soon she would be laying in bed, unable to recognize me. It happened because I started buying her lottery tickets for her, and in a few shorts months she could no longer do it. This in spite of the fact that she had been buying lottery tickets daily for 25 years. This happened five years ago.

Thanks to some good advice at the right time and some positive reinforcement I soon started learning there was "more there".

I learned that the more we did the "more there" she became. I took her into the gym and the exercise cured her from falling. It also improved her mean spirited behavior. Not overnight by the way, it happened over time.

When we would go to the doctor my mother was usually in a very bad mood. She didn't want to go. When we left she was in a very good mood. I actually told our doctor, I would like to bring her here everyday. Soon this observation turned into a plan of action. I realized that bright light and socialization turned my mother into a very different person. A happier easier to deal with person. A person with a very different look on her face.

It went on and on. Make an observation, turn it into action, and walla "more there".

"More there" meant a better quality of life for my mother. Importantly, better quality of life fom me -- the Alzheimer's caregiver. "More there."

I started to write about this often. I wrote, there is more in their than you think. This meant to me that other parts of the brain were still working.

But then I read Max's words and I now conclude he has a better way of saying what I wanted to say and communicate. "More there."

Here is the complete sentence -- We need to help the Alzheimer’s person find things the person will enjoy, and they will become "more there."

We....help....Alzheimer's....person....find...enjoy...."more there." Key word I think -- help.

Max wrote -- Many families have negative attitudes, feeling that the person is 'no longer there'. It is important to realize that the person is always there. We need to help the Alzheimer’s person find things the person will enjoy, and they will become "more there."

"No longer there." I can see how someone would conclude this. Before "more there", there was almost nothing there with my mother. That was five years ago.

"Always there".

We all need to find the path to "more there."

Thanks Max.

Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

Doctor - Patient - Caregiver American College of Physicians Position

2010-02-03T11:11:00.004-05:00

I learned years after the fact that my mother had gone into her doctor's office and started going nuts when they told her she had already gone to her doctor's appointment earlier in the day. In fact, she had gone to the appointment, but forget.....

By Bob DeMarco

The American College of Physicians has issued a position paper to help guide physicians when confronted with the doctor - patient - caregiver relationship. Don't complain, better late than never. Maybe.

You are probably thinking about time. Not exactly. This paper is really about how doctors can deal with ethical challenges when the caregiver is included in the equation.

This quote should give you an idea about the current state of affairs and doctor attitudes.

"Although we don't want anything to interfere with the physician-patient relationship, which is still key to all health care, we have to work out ways that caregivers are a part of this process too -- as long as the patient agrees," Dr. Hood said.

In other words, hey, we better get on the ball when it comes to caregivers, but don't forget to cover your butt.

While I was reading the paper it reminded me of a situation I found myself in when I first started caring for my mother.

Here is a bolded sentence in the American College of Physicians position paper that caught my attention:

The physician should routinely assess the patient’s wishes regarding the nature and degree of caregiver participation in the clinical encounter and strive to provide the patient’s desired level of privacy.

This refers specifically to the Health Insurance Portability and Accountability of 1996 Act (HIPAA). The law allows health professionals to share relevant health care information with the family caregiver if the patient agrees to, or does not object to, the disclosure.

And now, I'll describe a situation that occurred more than two years before my mother was "officially" diagnosed with Alzheimer's disease.

I learned years after the fact that my mother had gone into her doctor's office and started going nuts when they told her she had already gone to her doctor's appointment earlier in the day. In fact, she had gone to the appointment, but forget. She became so upset that they had to put her in a room, on a bed, and sedate her. When she calmed down they let her go home.

Did the doctor or anyone in his office inform me of this situation? NO. I was listed in her records as the emergency contact and they had my phone number.

How did I learn this happened? Well, almost three years after the fact, and after I had fired that doctor, I ran into the nurse that assisted him in his office. She proceeded to tell me about the incident. To say the least I was shocked. The nurse was also shocked. So shocked that she remembered the incident as if it had just happened.

This is how the Health Insurance Portability and Accountability (HIPAA) works. In this case, my mother had the right to her medical privacy. I asked the nurse -- did they ask my mother if she wanted them to call someone? As far as she knew, the answer was NO. When my mother was sufficiently calm, they sent her on her way. This included driving her car to get home.

Now this brings me to a more important issue. Do you have the correct medical power of attorney in place? A legal document that allows you to make all medical decisions on behalf of your loved one. The document that empowers you to talk on behalf of your loved one to the doctor, doctors in the hospital, and to your healthcare insurance company? To legally get information when you need it, and right now?

I bet the majority of you will answer NO.

The correct document might be more difficult to obtain than you think. When I asked Humana healthcare for the document, I learned that in order to get the correct document executed in Florida I needed to go to court. What is the law in your state? Have you contacted your healthcare provider and asked them for a copy of the document you will need? Have you executed the document and gotten it signed and notarized?

In our case, I took the Humana document, reworked it, and had an attorney friend of mine rework it to the point that it was legally binding. I then executed the document and sent copies to Humana and our personal care physician. Of course, it took three tries before Humana finally told me they had the document in my mother's file and everything was copacetic. In case you are not familiar with the word copacetic, it means "something is in excellent order or satisfactory". I believe this is the correct word in this situation and this is why I chose it.

I would recommend that you look into this as soon as possible. I intend to check with Humana and our personal care physician to insure that the document is still in the right place and still in effect.

Perhaps some of the readers of this blog that are in the healthcare industry could respond to this, share experiences, or provide us with additional advice. If so, please use the comments box below this article.

If you would like to write an article around this issue please contact me.
___________________________
The American College of Physicians has issued a position paper designed to help physicians navigate the doctor - patient - caregiver relationship. The paper is a good step in the right direction. However, I found it devoid of any real feeling or emotion. Colder than ice. Not really what I expected to read.

The position papers does explain the law, the rights of the sick person, and describes the role of the caregiver. Does it really do what is necessary to insure a good doctor -- caregiver relationship? Will it encourage doctors to take a more active role with the caregiver? Will it encourage doctors to get educated so that they can both communicate and assist caregivers?

I'll let you decide. Here is the abstract as it appears at the beginning of the position paper.

Abstract

Family caregivers play a major role in maximizing the health and quality of life of more than 30 million individuals with acute and chronic illness. Patients depend on family caregivers for assistance with daily activities, managing complex care, navigating the health care system, and communicating with health careprofessionals. Physical, emotional and financial stress may increase caregiver vulnerability to injury and illness. Geographically distant family caregivers and health professionals in the role of family caregivers may suffer additional burdens. Physician recognition of the value of the caregiver role may contribute to a positive caregiving experience and decrease rates of patient hospitalization and institutionalization. However, physicians may face ethical challenges in partnering with patients and family caregivers while preserving the primacy of the patient-physician relationship. The American College of Physicians in conjunction with ten other professional societies offers ethical guidance to physicians in developing mutually supportive patient-physician-caregiver relationships.

The above is exactly as it appears in the original document. One great big, long run on.

If you have the time, please go and read the document and let me know your reaction.

Family Caregivers, Patients and Physicians: Ethical Guidance to Optimize Relationships
FAMILY CAREGIVERS, PATIENTS AND PHYSICIANS: ETHICAL GUIDANCE TO OPTIMIZE RELATIONSHIPS
Position Paper of the American College of Physicians

Does anyone on this list know of existing courses that teach or educate doctors on methods and strategies to communicate with caregivers? That teach doctors about the "psyche" of the Alzheimer's caregivers and how to assist them when the diagnosis is made?

Does the Alzheimer's Association have a program of any kind to work with doctors and increase their understanding of Alzheimer's and the Alzheimer's caregiver?

Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

Adult Family Homes -- The Other Side of the Story

2010-02-03T09:07:00.007-05:00

Dee Burris' residences reflect the goals of the adult-home system: intimate care in a homelike setting where residents live as independently as possible within the bounds of their medical frailties.......

"This is hard, hard work. It's not glamorous. But I love what I do," says Dee Burris, left, a registered nurse whose three adult family homes include this one, The Gardens at Newcastle. One of the residents here is her own mother, Susie Koontz, right above.

The video tells the story....

An adult family home that works: stable staff, activities

By Michael J. Berens
Seattle Times staff reporter

Dee Burris plopped into an upholstered living-room chair, but she didn't relax. Not with five seniors on the move.

One woman shuffled across the room, trailing plastic tubing that snaked around the corner to an oxygen tank. Others played bingo in the kitchen. Another washed her hair with an aide's assistance.

There are no slow days at this adult family home — The Gardens at Newcastle. The ranch home sprawls over 4,000 square feet with seven bedrooms, five bathrooms and a sun deck.

"This is a 24-hour, seven-day-a-week job," says Burris, a registered nurse who owns two other adult family homes. "You're never off the job. This is hard, hard work. It's not glamorous. But I love what I do."

Residents have personalized their bedrooms, bringing knickknacks, a favorite chair or painting. They partake in daily activities, such as exercise classes. A recent Wednesday was "beauty day," with women taking turns in a hair-dryer chair.

Burris' residences reflect the goals of the adult-home system: intimate care in a homelike setting where residents live as independently as possible within the bounds of their medical frailties.

Burris is one of hundreds of owners whose homes have achieved word-of-mouth praise and, state records show, sterling track records.

She accepts Medicaid and private-pay residents. Rents average about $4,500 a month, she said, although the price can be much higher if specialized care is required.

Burris worked for years in hospitals and long-term-care facilities. In 1995, she opened her first adult family home as a way to care for her mother-in-law, who had suffered a stroke. Burris' own mother now lives in one of the three homes.

One key to success is employing dependable staff, Burris says. While some homes churn through employees, she has kept a core staff for more than a decade, offering competitive wages and benefits.

"This is not the way to get rich quick," she said. "It took me a long time to get off the ground. You truly have to care about helping people."

Burris craned her neck to look into the dining room. Somebody was heading to the patio door and maybe needed help.

It was time for her to get on the move.

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Is Pfizer Medivation's Dimebon a $1.5 Billion Blockbuster Drug ?

2010-02-02T12:55:00.010-05:00

Medivation (MDVN) is expected to release the results of its Phase 3 clinical trial of Dimebon in the not to distant future. Dimebon is designed for the treatment of Alzheimer's disease.....

By Bob DeMarco

Pfizer Medivation previously announced the Dimebon CONNECTION study results would be released during the first half of 2010.

There is great expectation not only in the Alzheimer's community but amongst investors.

Alzheimer's disease effects more than 5 million people in the United States, and more than 30 million worldwide. These numbers are expected to triple by 2050.

As I look across the Internet I am noticing that several reputable research analysis are forecasting annual sales of $1 to $1.5 billion if Dimebon is approved by the Food and Drug Administrtion (FDA). Current sales of drugs for Alzheimer's, including Pfizer's (PFE) Aricept, already exceed $5 billion.

Judging by the number of Google searches for Dimebon, and the number of searches coming to the Alzheimer's Reading Room via Google, I believe it is safe to say that Dimebon is on the minds of most of the Alzheimer's community. The number of searches for Dimebon exceeds the number of searches for all other experimental drugs currently in clinical trials and focused on Alzheimer's disease. The same would be true of the emails I receive on the Alzheimer's Reading Room.

Medivation's (MDVN) CONNECTION study is the center piece of its experimental studies with Dimebon. CONNECTION is a six-month, confirmatory, pivotal Phase 3 trial of the investigational drug Dimebon in patients with mild-to-moderate Alzheimer's disease. The key word here is: confirmatory.

Patients in the CONNECTION study are not taking any other Alzheimer's drug. Dimebon's effectiveness will be measured by both the ADAS-cog (Alzheimer's Disease Assessment Scale-cognitive subscale) and CIBIC-plus (Clinician's Interview-Based Impression of Change) tests. These are commonly used measures of cognition, memory and overall clinical function used to assess Alzheimer's patients. Over time, the ADAS-cog and CIBIC-plus scores of an Alzheimer patient decline as the patient gradually loses memory, and loses the ability to do normal everyday functions.

The purpose of the CONNECTION study is to determine if Dimebon can improve a patient's cognitive and overall function for a period to time, or at least slow the progression of the Alzheimer's disease.

Here is a straightforward comparison. Aricept, the number one selling Alzheimer's drug, demonstrated a 3-point improvement in ADAS-cog over placebo in its six-month pivotal study.

In Medivation's pivotal phase two study, the ADAS-cog benefit for Dimebon over placebo was 5.9 points at 9 months and 6.9 points at one year. Dimebon demonstrated statistically significant improvements in memory, cognition behavior and overall function. Remarkable or too good to be true? The results were met with lots of skepticism in the scientific community.

We are now awaiting the results for six-month, confirmatory, pivotal Phase 3 trial of Dimebon.

It should be noted that the phase two Dimebon study results were published in the prestigious British medical journal The Lancet in July 2008. This gives the experimental findings additional credibility. This added scrutiny of Dimebon should get your attention.

One issue that I will be looking at closely is how the patients on the Placebo score on the tests. There is scientific evidence that patients stay out of nursing homes longer when participating in clinical trials of experimental drugs -- even when the experimental drugs don't work. There is also evidence that study participants benefit substantially from the frequent, high-quality medical attention they receive as part of a clinical trial. These findings can be an issue in the results of any clinical trial.

Pfizer Medivation has additional clinical trials with Dimebon going on right now. The drug is being in tested in combination with Aricept; and, is also being tested separately in combination with Namenda.

It is widely known that the Dimebon CONNECTION study is for Alzheimer's patients with mild-to-moderate Alzheimer's disease. I don't think it is widely know that Dimebon is now being tested in patients with moderate to severe Alzheimer's Disease. There is no exisitng drug that is designed to work across the entire spectrum of Alzheimer's -- mild-moderate-severe Alzheimer's disease.

If Medivation's Dimebon proves out on either front -- mild-moderate or moderate-severe this could turn into a blockbuster drug. Both fronts and the sky is the limit.

Caregivers with family members and spouses suffering from Alzheimer's disease are already impatiently waiting for the Dimebon clinical trial test results and the verdict from the FDA. If the drug gains approval, doctors will be inundated with telephone calls for appointments. The only negative I can see for the Alzheimer's community is that this drug is going to be EXPENSIVE.

My guess is that this drug, by itself, will send older citizens into or near the Medicare donut hole by my birthday each year --August 12th. Ouch.

To read additional information about the CONNECTION study and about ongoing Dimebon clinical trials -- go here.

FULL DISCLOSURE: This is not an offer to buy or sell any stock, bond, or commodity. The author is not a registered securities analyst or associated with any member firm. The contents of this article are purely informational. All information was obtained from readily available public sources of information. The author does not own Pfizer (PFE) or Medivation (MDVN) at the time this article is being published.

The mother of the author, Dorothy DeMarco, is currently enrolled in a phase three clinical trial for Dimebon -- A Phase 3 Efficacy Study Of Dimebon In Patients With Moderate To Severe Alzheimer's Disease.

Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room

Beautiful Does Not Always Mean Better

2010-02-02T01:20:00.006-05:00

The bottom line is more money or less money doesn’t change the hearts of the people offering to care for your loved one. They either have the right heart or they don’t.....

By Angil Tarach RN GCM

I just finished reading Do You Really Get to Choose the Facility for a Dementia Patient?

As the article started I expected it to go into what an awful place the hospital had sent Great Grams. The article didn’t go as I expected, and because of what was written, I have decided to take this article further.

In my 30+ years in senior care and advocacy I have spent an incredible amount of time in long term care facilities. I have seen the best, the worst, and everything in between.

What I know is many people base their decision or opinion of a nursing home on the décor, and the scent. People who haven’t had any experience or much exposure to long term care facilities have the idea that if the place is new and beautiful, and doesn’t smell of urine it must be good.

Let’s just address the odor and get that out of the way. There are lots of odors in nursing homes. What isn’t understood is some are temporary and some are permanent. If the furniture and/or carpet have been repeatedly soiled by urine it becomes a permanent scent in the facility and this is a definite red flag to avoid this one like the plague! You will generally only know if you see several stain marks on the furniture or floors or visit more than once at different times.

There are generally quite a few residents in any long term care facility who suffer with incontinence. There are also regular times of the day when the staff is tending to those residents, such as first thing in the morning, after breakfast and before lunch, before shift change, after lunch and dinner, at bedtime, and during the night. Typically there will be approximately 6 or so incontinence care rounds by the staff in a 24 hour period, not including individual unscheduled care.

If you visit or tour a facility at any of those times, you most likely will experience odors you would rather not. If the facility is providing great care, these will be temporary odors, but your impression will be “this place smells like urine”.

Understanding the facility schedule can help you understand that just because you smell unpleasant odors in a facility doesn’t mean this is the constant smell your family member will be exposed to. I recommend visiting at different times to know for sure whether the odor is temporary or permanent, and keep your eyes open for signs of poor care.

Now to décor. I have spent time in the most beautiful brand new facilities to the oldest and out of date places. I have always said the only difference between the “rich” nursing homes and the “poor” ones is the décor. There are 2 local facilities that come to mind. One is fairly new and beautifully decorated, the other old, run down and outdated. As you can expect the newer facility has more private pay residents and patients, and the old one has more residents on Medicaid, who cannot afford to privately pay.

Because I have spent considerable time in both I have seen a lot. What may surprise you is the difference in care. Many would expect there would be better care when a patient is privately paying because they could move themselves and their money almost anywhere. Medicaid patients have much less freedom of choice because they can only stay in a Medicaid approved bed.

How the bed/room is paid for doesn’t necessarily mean a thing. In the instance of the 2 facilities I have in mind, nothing could be further from the truth! The care in the newer and beautifully decorated facility is not good at all, and apparently is not getting any better, because we have people applying for employment with us that are telling us they are leaving or have left there because it’s so bad. They say there are little or no adequate supplies, they are extremely short staffed, and the administration doesn’t care. The staff walks around miserable, and the working environment is unpleasant. They are sad for the patients and can’t do it anymore.

The old and rundown facility cares deeply for the patients. At one time this facility had a bad reputation. New owners took over several years ago, and the care improved greatly. The sad thing is people who heard about their previously bad reputation, and have not spent time there since the new owners, still believe it’s a terrible place. When I was a hospice and home health nurse I had several patients at any given time there. My patients were always clean, comfortable, and were treated well by the staff. Whenever I had to discuss orders with a staff member they were always pleasant, receptive, and wanted the best for the patient. The staff were loving and cheerful with the patients, and created a homey feeling.

I have a current client who we have helped take care of in her home for the last 5 years. Once a year her family goes on vacation and wants her placed in a facility while they are gone. I recommended the old facility I have been talking about. By the way, this patient lives in a family member’s home who is a physician, so they are not oblivious to care expectations. Anyway, they took my recommendation and have placed their loved one in this facility for a week or so every year for the last 5 years. The family has been completely happy with the care their loved one has received while they are on vacation. This person receives meticulous care at home, so I know their expectations are high.

Do I think this patient would get the same wonderful care in the newer beautiful facility? Absolutely not! Did this family wonder where I was referring them when they first visited this old nursing home? I’m sure they did.

This is one example of thousands across the country. You will find great care and horrible care in the most beautiful of facilities, and the best and worst in the oldest and most outdated facilities.

You would now expect the difference to be the staff, and you are right, but there is more. It really comes down to the owners and administration. The difference in staff is because of the difference in the people running these facilities. If the owner(s) and administrative staff really have care as the priority, they will hire and retain great staff and not hire or terminate the staff that doesn’t meet their expectations. They facilitate the environment and working conditions for the staff, and lead a warm, caring, and compassionate team of individuals because of their example.

The exact opposite is true when the owner’s motivation is primarily financial. All owners have to take into account the financial aspect of a facility, but is it the motivation behind the facility? If you can tell me why a person opened a facility, I can pretty much tell you what kind of care to expect.

If the owner is just concerned about how much money they make, their concern is to have enough warm bodies in the building to meet state requirements, and running the place good enough to keep beds full and get through inspections and stay open. They are not concerned about how much their staff care, how the staff is treated, and whether or not they are happy in their jobs. They ignore complaints, and overlook poor care.

You can always find some people who truly care in the bad facilities and bad staff in the good ones, but either way they won’t stay.

I hope this enlightens those who will face deciding facility placement.

The bottom line is more money or less money doesn’t change the hearts of the people offering to care for your loved one. They either have the right heart or they don’t and no amount of beautiful furniture or draperies will let you know about the type of care they provide.

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Angil Tarach(RN GCM) has over 30 years of experience, and is a nationally known expert in senior care and advocacy. Angil is also the owner of Visiting Angels in Ann Arbor, Michigan.

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Communicating in Alzheimer's World

Dr Oz Alzheimer's Memory Quiz (Test)

What is Alzheimer's Disease?

Does the Combination of Aricept and Namenda Help Slow the Rate of Decline in Alzheimer's Patients

Test Your Memory (TYM) for Alzheimer's or Dementia in Five Minutes

Alzheimer's World -- Two Circles Trying to Intersect

Baby Boomer Alzheimer's Perspective

Alzheimer's Disease -- The Front Row

Is it Really Alzheimer's or Something Else?

Alzheimer's Clock Draw Test -- Detect the Signs of Alzheimer's Early

60 Good Reasons to Subscribe to the Alzheimer's Reading Room

"I Remember Better When I Paint"

Original content Angil Tarach, the Alzheimer's Reading Room

Random Thought at the End of 2009

2010-02-01T21:41:00.001-05:00

Alzheimer's will try to rob the Alzheimer's caregiver of their spirit. It will try and send them into the black hole of depression. Every day Alzheimer's whispers in the ear of the caregiver -- give up.

By Bob DeMarco

I made a decision to get serious about the Alzheimer's Reading Room in November, 2008. We had about 45 real subscribers, and 1,000 page views a month.

How and why did I make the decision? Simple really. I started receiving emails from real people, real caregivers. As I read and responded to those emails it had an impact on me. A very real and positive impact.

As I read emails, I started to think about where I was on the Alzheimer's caregiver continuum. Often I thought, been there.

Been there might sound like an easy explanation. Been there often meant scared, afraid, confused. Been there often meant a need to vent. Been there. Still there.

___________________________
During 2009 I wrote, Alzheimer's is a sinister disease it kills the brain of the person suffering from Alzheimer's, and it will try to kill the Alzheimer's caregiver.

Alzheimer's will try to rob the Alzheimer's caregiver of their spirit. It will try and send them into the black hole of depression. Every day Alzheimer's whispers in the ear of the caregiver -- give up.

Some caregivers give up. It is not because they are weak in spirit, it is because they are often weak in support.

Most Alzheimer's caregivers are ill equipped to deal with Alzheimer's disease. You can put everything we know about Alzheimer's in a thimble on the day we hear the word -- Alzheimer's.

Most Alzheimer's caregivers don't know where to turn. The vast majority of Alzheimer's caregivers won't get any help from their doctor. We have to do something about that.

The word "doctor" comes from the Latin "docere" meaning to teach. A doctor was a teacher, especially a learned or authoritative one. Personal care physicians have a lot to learn about Alzheimer's disease. They need to learn how to teach the Alzheimer's caregivers what to do. How to start them on the road to good caregiving. I suppose we need to find a way to teach doctors about how an Alzheimer's caregiver feels on the day they say -- Alzheimer's.

How to educate the personal care physician? I'll give that some thought in 2010. I am open and receptive to insight, advice and ideas on how to accomplish that mission.
___________________________
During 2009, the Alzheimer's Reading Room started to grow. It grew thanks to reader referrals and Google. The Alzheimer's Reading Room isn't part of a well funded organization. We don't have a marketing budget or a marketing team. I often wonder, I wonder what would happen if we had sponsors. Or, some kind of serious marketing effort. A real effort to bring the Alzheimer's Reading Room into the awareness of people who could benefit from the advice and insight.

For every Ronald, Olga, Angil, Laurry, Tony, Rose, Phil, Pamela, Lou, Carole, Jocelyn, Judy, Betsyanne, Sandy, Emma, Mike, Laura, Patricia, Nancy, Dave, Ilene, Kathy, Barbara, Gail, Dan, Kerry, Dale, Beverly, Julia, Lilli, Elizabeth, Brian, Patrice, Gloria, Liz, Brenda, Amy, Lori, Christy, Jessica, Jim, Margie, Pat, Nancy, Alison, Peter, Katherin, Jana, Amanda, Lynda, Max, Stazza, Paula, Beth, John and Carolina there are thousands more...millions more. Could they benefit if they knew about the Alzheimer's Reading Room?
___________________________
We reached about 61,000 unique individuals this year. Some came once, some came often. If everyone was a caregiver (not likely) we reached less than one percent of the caregivers.

If you would have asked me in November, 2008 if that was possible, I would have said yes. If you asked me if it was likely, I would have said no.

Here is something surprising. We have about 1,660 subscribers now. The subscribers account for about 8.5 percent of the pages read each month. We are now 30 times the size we were when the year started.
___________________________
I am spending about 5 hours a day on this blog now. I have more than 85 emails in my box that I need to respond too. I have a stack of books that deserve my attention, I'll get to them.

Here is the good news, I made about $1.25 an hour for my effort (might sound puny but I received a raise this year). This came from the Google ads and clicks through to Amazon books via the website. Thanks for the support.

During the year I turned down several offers to write for other sites. One offered 300 bucks an article. Another offered to pay me by the word (that would have been a good deal for me --LOL).

I turned down two legitimate offers to buy the Alzheimer's Reading Room. Both offers were for more than the blog is worth -- by any metric. My buddies tell me I am an idiot for not selling. It is not the first time they told me that. They usually learn a few years down the road who was the real idiot.

If I was in it for the money I would quit tomorrow.
___________________________
I decided I'll stay right here.

I'll continue my own metamorphosis. I'll start the metamorphosis of the Alzheimer's Reading Room soon. The natural progression of growth and learning.

Based on the emails, I believe people are learning and benefiting from this blog.

I know I am learning a great deal from each of you. So thanks.

2010? Who knows?

My name is Bob DeMarco, I am an Alzheimer's caregiver. My mother Dorothy, now 93 years old, sufferers from Alzheimer's disease. We live our life one day at a time.

I am looking forward to the future.

Subscribe to The Alzheimer's Reading Room

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Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,050 articles with more than 8,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, Alzheimer's Reading Room
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Terry Pratchett Ready to Support Assisted Suicide for Alzheimer's Patients

2010-02-01T13:43:00.002-05:00

By Bob DeMarco

Terry Pratchett is one of the world's most famous Alzheimer's patients. The best-selling British fantasy author says he believes an assisted suicide panel should be set up to help Britons who want to end their lives.

We should look to the medical profession that has helped us to live healthier lives to help us die peacefully among our loved ones -- Sir Terry Pratchett

Pratchett believes that "the time is really coming" for legalizing assisted death and he is going to speak out on the issue in a prepared speech.

Two recent U.K. polls back Pratchett's view.

In a survey for BBC Panorama, 73% of those questioned said friends or relatives should be allowed to help someone who is terminally ill to commit suicide without fear of punishment.

A YouGov poll of 2,053 people for the Telegraph produced even stronger support, with 80% saying that relatives should not be prosecuted, and 75% backing a change in the law.

Your opinion on assisted suicide for persons suffering from Alzheimer's and dementia?

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Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

The Alzheimer's Action Plan

Original content Bob DeMarco, the Alzheimer's Reading Room

Do You Really Get to Choose the Facility for a Dementia Patient?

2010-02-01T08:41:00.003-05:00

The last time I saw Great Grams, a few days before her death, she was restrained in a chair sitting near the nurses’ station, watching everything......

By Max Wallack

Great Grams (Gertrude Finkelstein) and Max Wallack
No matter how hard you try to keep a dementia or Alzheimer’s patient at home, eventually the day may come that it is not possible.

We had planned that that day would never come for Great Grams.

She had spent about a week in a major teaching hospital because of leg pain. The doctors tried a great number of medications. Nothing really seemed to help. I suspect the pain was really caused by some of her faulty wiring in her brain.

However, while she was in the hospital, the doctors realized just how much she had deteriorated mentally. She was choking on food and rarely communicated.

However, Great Grams had a compulsion to run, and she was going to run every chance she got. They had to hire a “sitter” to stay in the room with her. Even the sitter couldn’t handle her. When Great Grams saw a young child visiting someone, she was running to play with them. Eventually, they used diapers to tie her to the chair.

Great Grams had been on Reminyl. Her own doctor had told us that when a person who is on Reminyl stops taking the drug, they decline rapidly, quickly losing all the abilities that the drug had help maintain.

During that hospital visit, some physician decided that the Reminyl wasn’t doing her any good because she was in such poor condition. So, he stopped the drug. That was really the beginning of the end for Great Grams.

Great Grams came home with us soon after. She had been put on hospice home care. Included was a 24 hour nurse available by phone. The nurse was called many times those first few nights.

Great Grams wouldn’t sleep. We rented a special bed with sidebars. You would think that would work on a small 93 year old woman, wouldn’t you? Nope. All that did was make a higher surface from which Great Grams could fall on her climb out.

Grandma was exhausted. Grandpa slept on the floor at the door to Great Grams room just to keep her inside for a few hours so Grandma could rest.

After a few days, hospice took her off their list, saying they couldn’t handle her. They suggested maybe she had another urinary tract infection, and we should take her to the local hospital. Great Grams “agreed” to go, even taking off her rings and handing them to Grandma. She must have understood at some level.

Of course, the hospital did find a urinary tract infection. They always found one whenever they tested Great Grams. They kept her for several weeks. But, she did not improve. The doctor there, who had seen her only a few months earlier, was shocked at her deterioration. (No Reminyl).

In that hospital, she climbed out of the high bed frequently, and fell on the hard tile floor. Eventually, they also tied her down.

Then, the hospital decided they could no longer keep her, and that she was too ill to be cared for at home. They said we had to get her out of there within a few days, or the bill of almost a thousand dollars a day would be ours to pay.

A few days later, an “opening” happened in a dementia ward in a facility in a neighboring town. We were told we basically had no choice. Great Grams would be sent there in an ambulance.

Grandma went over to see the place. She had read about nursing homes. One thing she had read was to make sure there was no urine odor.

When Great Grams went to the dementia ward, she was almost knocked off her feet by the stench of urine! When the nurse showed Grandma what would be Great Grams’ bed, Grandma saw a small insect crawl across it. It was a nightmare!

HOWEVER, first impressions can be wrong. It turned out that the odor had been caused by a defective bathroom toilet which was being repaired. Insects were never seen again.

And –MOST IMPORTANT OF ALL- the nurse in charge of the unit was a man with a huge heart! He treated each patient as if they were his own mom. He had eyes “in back of his head” and was aware of where each patient was and what they were doing.

Each afternoon, he would put on Sousa marches and march in the halls with each patient who could do it. His staff took their cues from him and treated the patients with respect.

They made every attempt to avoid restraints. They even put mattresses on the floor on both sides of Great Grams’ bed for when she got up at night.

Every day, after breakfast, chairs were all lined up around the nurses’ station so the patients could sit and be entertained by watching the nurses come and go. When one patient had a visitor, it was a visitor for all the patients.

We still hoped to take Great Grams home. The head nurse told us that the hospital had “warned him” that we still felt that way.

However, Great Grams continued to decline rapidly. She couldn’t and wouldn’t eat. Soon, we had to give permission for restraints because she kept falling and falling. The head nurse was very, very kind to her. She couldn’t have been in a better place.

It didn’t matter that the rug was old. It didn’t matter that the nurses’ station was all scuffed and banged up. It didn’t matter that the physical therapy was in the basement of this old, old building which had once been a factory.

It mattered that the people who cared for Great Grams were very kind.

The last time I saw Great Grams, a few days before her death, she was restrained in a chair sitting near the nurses’ station, watching everything. She played tug of war with me -- pulling me toward her so strongly that I really could barely free myself. Then, she would pull again. She was still communicating with me.

Max Wallack is a student at Boston University Academy. His great grandmother, Gertrude Finkelstein, suffered from Alzheimer's disease. Max is the founder of PUZZLES TO REMEMBER , a 501(c.)3 charitable organization. PUZZLES TO REMEMBER is a project that provides puzzles to nursing homes and other institutions that care for Alzheimer's and dementia patients.

What is The Virtual Dementia Tour program?

2010-01-31T14:20:00.004-05:00

Imagine yourself in a carnival funhouse. You step inside and the lights go dim. You can barely see what's in front of you so you reach out your arms to feel your way along the walls, but this is no use.....

By Bob DeMarco

The Virtual Dementia Tour is a, hands-on, experiential tool kit created for anyone seeking to understand the physical and mental challenges of those suffering from Alzheimer's and dementia.

In short, it is a tool that gives you a form of dementia, and allows you to experience what it is like to be suffering from dementia. This is a commutation tool. A tool designed to let you feel and understand what your loved one might be feeling like at any point in time. As such, it is designed to help you improve communication by giving you the experience of dementia.

The major claim is that the Virtual Dementia Tour gives you a window "into their world". I tried it. It works.

Interestingly, I believe this tool would work best if it were tested by siblings and families of the ONE -- the Alzheimer's caregiver. This would give any outsider a good understanding of the behaviors that Alzheimer's caregivers see, face, and deal with all day long every day of the week. Key words here -- empathy for the caregiver, sympathy for the person suffering from Alzheimer's disease.

While doing the Virtual Dementia Tour you become completely disoriented and disconcerted. Your brain just won't do what you want it to do. Imagine that.

The virtual dementia program was developed by P. K. Beville of Second Wind Dreams. Second Wind Dreams focuses on those living in eldercare communities or in hospice care.

The Virtual Dementia Tour was featured on ABCs Nightline in July. They have an excellent article and a video where Primetime's Cynthia McFadden participates in the experiment. She describes the experience as "very humbling". To read and watch go here.

To visit Second Wind Dreams go here.

I also want to thank P.K. Beville for her continued support and frequent mentions of the Alzheimer's Reading Room.

Subscribe to The Alzheimer's Reading Room

Popular articles on the Alzheimer's Reading Room
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Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,050 articles with more than 8,000 links on the Internet. Bob resides in Delray Beach, FL.

A Caregiver's Guide to Alzheimer's Disease: 300 Tips for Making Life Easier

Original content Bob DeMarco, the Alzheimer's Reading Room

Adult Family Homes -- Seniors Exploited and for Sale

2010-01-31T10:42:00.002-05:00

Adult family homes are springing up all over the nation. They have become more plentiful than Starbucks stores. But the explosive growth, fueled by profiteers and a lack of careful state regulation, is leaving thousands of people vulnerable to harm......

By Bob DeMarco

High quality care facilities for persons suffering from Alzheimer's disease often have waiting lists. As a result, spouses often look to adult family homes as an alternative. A good idea in principle, it opens the door for con-artists and greedy thieves to exploit our most vulnerable citizens.

You can read the in depth story here. Or watch the video below. Make sure you put something soft in your hand to throw against the wall.

If you know someone in or considering an Adult Family Home share this. Better safe than sorry.

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Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

Help on the Way for Sandwich Generation Caregivers ?

2010-01-30T15:42:00.003-05:00

They like it.....

By Bob DeMarco

This week the Middle Class Task Force unveiled a series of initiatives in the President's 2011 budget that are aimed at helping the so-called "sandwich generation" and others.

Millions of Americans provide unpaid care to aging relatives – including approximately 23 million caregivers with jobs and 12 million who are also caring for their own children. That's why the Middle Class Task Force’s "squeeze" initiative includes help for family caregivers.

"AARP is grateful that the Middle Class Task Force has drawn attention to an issue that is deeply important to our members—the critical role of family caregivers and what we should be doing to help them. Approximately 65 million Americans provide care to a loved one, giving more than $375 billion worth of unpaid care each year—often at their own financial and emotional expense. Increasing support to these invaluable individuals would be an important step to help those who do so much to help others." -- Elinor Ginzler, AARP

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"Vice President Biden’s Middle Class Task Force’s recommendation to increase funding for the National Family Caregiver Support Program and Lifespan Respite, along with strengthening supportive services through Title III-B of the Older Americans Act, represents a huge investment in community-based programs that support the independence of older Americans and their caregivers. These funds will enable them to access and get the critical services that they need while avoiding unnecessary and more expensive institutional care or spending down to Medicaid. We applaud the work that has been done by the Administration that serves to strengthen long term living options through home and community-based services." --Sandy Markwood, CEO of National Association for Area Agencies on Aging

The extra funding proposed by the Task Force will allow nearly 200,000 additional caregivers to be served and 3 million more hours of respite care to be provided. It adds funding to programs that provide transportation help, adult day care, and in-home services including aides to help bathe and cook.

"Family caregivers who struggle each day with practical and financial challenges have been anxiously waiting for this issue to be brought to the national stage and for relief in their own homes and communities. For these families, assistance at any level can help delay nursing home placement and enhance caregiver well being. The proposed initiatives represent a welcome change in direction, from minimal or flatlined funding to amounts that will make a difference for hundreds of thousands of American families." --Eric Hall, President and Chief Executive Officer of the Alzheimers Foundation of America

"The National Alliance for Caregiving is proud to support the Middle Class Task Force and their efforts to support family caregivers. This is a wonderful addition to the National Family Caregiver Support Program and it is a perfect way to recognize these caregivers who on average spend 18 hours a week providing care. The funding for transportation, adult day care and other services under Title III b will also help family caregivers by assisting the older adult they are caring for. We are grateful to the Middle Class Task Force for bringing much needed public awareness to the family caregiver." --Gail Hunt, CEO of the National Alliance for Caregiving

White House Announces Middle Class Task Force

President Barack Obama today announced the creation of a White House Task Force on Middle Class Working Families to be chaired by Vice President Joe Biden. The Task Force is a major initiative targeted at raising the living standards of middle-class, working families in America. It is comprised of top-level administration policy makers, and in addition to regular meetings, it will conduct outreach sessions with representatives of labor, business, and the advocacy communities.

President Obama said: "The strength of our economy can be measured by the strength of our middle class. That is why I have signed a memorandum to create the Task Force on Middle-Class Working Families – and why I have asked my Vice President to lead it. This is a difficult moment. But I believe, if we act boldly and swiftly, it can be an American moment - when we work through our differences and overcome our divisions to face this crisis."

Vice President Biden said: "America’s middle class is hurting. Trillions of dollars in home equity and retirement savings and college savings are gone. And every day, more and more Americans are losing their jobs. President Obama and I are determined to change this. Quite simply, a strong middle class equals a strong America. We can’t have one without the other. This Task Force will be an important vehicle to assess new and existing policies across the board and determine if they are helping or hurting the middle class. It is our charge to get the middle class – the backbone of this country – up and running again."
The Vice President and members of the task force will work with a wide array of federal agencies that have responsibility for key issues facing middle class and working families, and expedite administrative reforms, propose Executive orders, and develop legislative and policy proposals that can be of special importance to working families.

To visit the Middle Class Task Force website go here.

Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

Mammograms for Women With Dementia? What is the Right Decision?

2010-01-30T12:44:00.003-05:00

By Max Wallack

Max Wallack is a student at Boston University Academy. His great grandmother, Gertrude Finkelstein, suffered from Alzheimer's disease. Max is the founder of PUZZLES TO REMEMBER , a 501(c.)3 charitable organization. PUZZLES TO REMEMBER is a project that provides puzzles to nursing homes and other institutions that care for Alzheimer's and dementia patients.

Today I read an article about the wisdom of giving mammograms to women with dementia. I think this is a very, very hard decision to make.

Researchers found that among more than 2,100 U.S. women age 70 and older, 18 percent of those with advanced cognitive impairment had received a screening mammogram in the past two years.

Sure, it makes sense that we should not torture elderly women who are within three years of death and will certainly be very frightened by not understanding what is going on when receiving a mammogram. But, who is going to make such a decision?

Can we be sure that the decision made by one doctor would be the same if a different doctor were consulted? Are we going to set up committees to decide these things? How much would that add to the cost of healthcare?

Should the family members make the decision? Are family members ALWAYS guided by what is best for a dementia patient?

With dementia, do we really know how long a person will survive? What about medications being developed that could add quality years?

I have seen some of this situation personally. Great Grams was told she needed a special type of X-ray because of a suspicious mass on her mammogram. This was about three years before her death.

She was already having behavioral changes, but we did not know she had dementia. In order to perform the special X-ray test, the physician referred Great Grams for psychiatric evaluation, and she was put on an antidepressant to calm her enough to be able to get through the test.

Someone the family trusted advised us to go ahead and have her do the complicated X-ray test because she was so physically healthy, even at 90. He felt she had the potential of having many more years of life.

Great Grams did go ahead and receive the additional testing, but it was traumatic for her, and the results were benign. Clearly, the test situation did her harm. Her personality changed rapidly during that time period, and only a few months later she was hospitalized for her first episode of delirium.

In retrospect, Great Grams should never have had that mammogram. But who can play the role of God and decide these things beforehand? I don’t know the answer.

I am interested in learning what you think about this issue. Or, if you have had a similar experience.

To read the article go here.

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Loneliness and the Long Distance Runner

2010-01-29T15:53:00.010-05:00

Loneliness is a problem common to Alzheimer's caregivers. Rare is the Alzheimer's caregiver that doesn't feel lonely.

By Bob DeMarco

If it were not for the Alzheimer's Reading Room, I often wonder what my life as an Alzheimer's caregiver would be like? I consider myself to be fortunate.

During this last year, I have met more wonderful and fascinating people than most people could meet in a lifetime.

As a result, I am never lonely and I am never alone.

The dynamic and the interaction with these persons is always interesting and often uplifting to me. When I say everyone, I am referring not only to the people that emailed me but also to every single person that has taken the time to make a serious comment on this blog.

I do consider the people that I email frequently to be good friends. Odd, because I have never met any of them in person. I do talk to some of them on the phone. Most of the communication takes place via email.

Beyond these good friends, I have too many friends to count. They email me and tell me their most intimate thoughts. Occasionally, I receive long detailed emails where someone tells me how they are feeling. They vent, they tell me about their difficulties accepting Alzheimer's, they share their successes, failures and angst. I understand how they are feeling. It is easy to understand and empathize, been there, am there.

When people email me they make me laugh, they make me smile, and sometimes they make me cry. Not all of the emails are dark, many bring in the light.

In my real life many of the most interesting and best people I know have faded away. Its not all their fault. I am hoping to reattach at some point in the future. Only time will tell.

I have this life right here. I am proud to say its a big life. Very big.

As my mother has worsened my social life has dwindled down to almost zero. Or has it?

I now notice I am getting asked more often about "my social life". Do you get out? Do you go out? Can you go out? Do you have any time of your own? I am not worried about me. I am worried about the millions of caregivers that might answer the question the same way I just did. I'm worried because I know they are lonely and are often abandoned and/or feeling abandoned.

Most people run from Alzheimer's they run away as fast as they can. They run. They are the sprinters.

The Alzheimer's caregivers on the other hand are the long distance runners. They don't run away from Alzheimer's, then run with it. They run and run and run, but then have to ask -- where is the finish line? Where is it? What does it look like? What will it feel like to cross the finish line?

Loneliness is a problem common to Alzheimer's caregivers. Rare is the Alzheimer's caregiver that doesn't feel lonely.

Alzheimer's caregiver say...

They experience a general sense of emptiness.
They miss having people around.
They feel like they don't have enough friends.
They often feel abandoned. They miss having really good friends.

Emptiness comes in many forms.

It comes to me when I can't have a serious in depth conversation with my mother. I would like to talk to her like we did in the old days. I would like to hear her opinions. What she is thinking, what she is feeling? She can't tell me.

I miss the time when I could ask her what she wanted to eat for dinner, and when she could give me an answer.

I miss when I would take her to the mall and she would disappear. She was always hard to find. She was hard, impossible to spot. And then she would just pop out of nowhere. Uncanny.

I do miss having real people around. I am fortunate, I have a great imagination. I always make up a face for my virtual friends. I see them even before they finally send me an image. I hear their voice when I read their emails, even if I have never heard their voice. Now that I think about it, they are real people.

Judy Berry looked a lot different then I thought she would. Angil didn't.

I know what Max looks like. But, if I didn't have his image, and if I didn't know his age he would look very different. I have to pinch myself when I read his words. For some reason I have to continually remind myself, he is thirteen years old. In many ways, Max makes me want to tell the future to hurry up and get here. I can't wait to see what happens with Max. Whatever it is, it is going to be important.

I understand why Alzheimer's caregivers feel abandoned. Been there.

I didn't like it in the beginning. After a while, I decided to accept it as a part of the long distance run. Alzheimer's did cost me a relationship. I don't blame anyone. Its part of the long distance run. I am looking forward to the future with more people in my life. But, I refuse to allow Alzheimer's to make me feel sorry for myself. I continue to run.

There is a wonderful counterpoint to abandonment. This counterpoint is the mission you are accomplishing.

When your mission as an Alzheimer's caregiver is accomplished, sooner or later you will be filled with an enormous amount of fulfillment. You will have accomplished something that you won't be able to explain and you won't have to explain. You'll know inside, and that will be more than enough.

You might, however, meet another Alzheimer's caregiver that has run the distance. You won't need to explain to them. They know. They'll look into your eyes and you'll know they know. They understand. I haven't been there yet. But, I know because I have looked into the eyes of other long distances runners. I have read their words right here.

For now, I'll continue my long distance run with Alzheimer's disease. I learned the more you run the stronger you get. I learned I am not running alone. I'll go the distance and along the way I'll meet more and more of the runners. I hope they decide to run with me.

I just wanted to let everyone know. I won't stop running when I cross the Alzheimer's finish line. I'll run the next race. I'm looking forward to that run.

You see, I have a lot of good friends, they have accomplished their mission, and they are already running the new race.

For now, I'll run with the other Alzheimer's caregivers.

If we run together we won't be lonely, we won't be alone, and we will cross the finish line.

We won't have to tell. We'll know what we accomplished deep inside.

For me, that will be more than enough.

My name is Bob DeMarco, I am an Alzheimer's caregiver. My mother Dorothy, now 93 years old, suffers from Alzheimer's disease. We fully intend to go the distance.

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Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

Rember It's Back, or Is It?

2010-01-29T01:57:00.001-05:00

Rember is supposedly a new version of an existing chemical substance, methylene blue (MTC), but modified to be used as a drug for the treatment and prevention of Alzheimer’s.....

By Bob DeMarco

Rember blasted on to the Alzheimer's scene in 2008. No news and not a single press release from the company since July 2008. Not until today.

The Express.co.uk is reporting that Taurx is seeking 80 million pounds to fund huge clinical trials in the U.S. and U.K. The article basically regurgitates the same information and sensational claims that were first made in July, 2008.
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TauRx Therapeutics was the big hit at the International Conference on Alzheimer's Disease (ICAD) in 2008. They reported on an amazing new experiment Alzheimer's drug -- rember.

The news release direct from ICAD created a tidal wave of press and news on television when the company made this claim:

New research findings point to a new treatment that appears to slow the progress of Alzheimer's by 81% over a year. The product - rember - is the first drug to act to arrest the progression of Alzheimer's disease by targeting the tangles which are highly correlated with the disease.

With the imprimatur of the Alzheimer's Association, experts hailing the study as a major development in the fight against Alzheimer's, and the lead scientist Dr. Claude Wischik of the University of Aberdeen raving, one could have concluded that a cure for Alzheimer's was possible.

“We have demonstrated for the first time that it may be possible to arrest progression of the disease by targeting the tangles which are highly correlated with the disease,” Professor Wischik said. “This is the most significant development in the treatment of the tangles since Alois Alzheimer discovered them in 1907.”

And then, the story died. Not a single story or piece of information that the experimental drug testing was moving forward.

A quick check of the TauRx website will yield nothing. It appears that the last time the site was updated was on July 30, 2008. The date of the announcement. The site itself was thrown up in haste and is less than impressive.

A search on the Alzheimer's Association website yields nothing new since July 30, 2008. In fact the link to the ICAD press release is broken, no longer available.

As an x-Wall Street venture capitalist I have been wondering for some time why didn't this company receive immediate financing for a phase 3 clinical trial?

One reason could be because there has never been a sentence published about rember in a scientific journal.

Another reason that comes to mind could be that the drug is a supposed new formulation of an existing chemical substance methylene blue. Among other ailments MTC has been used in the past to treat urinary tract infections and other conditions. Could a new formulation of something that has been around for 30 years actually be patented? Stranger things have happened, so I'll leave that one to the attorney's.

I did consider getting the compound manufactured and trying it on my mother. After all the suggested dosage is now in the public domain -- 20 mg, three times a day.

A word of warning here, it turns your pee blue. This lead to one interesting comment I read. The writer speculated, how do you run a double blind clinical trial if your pee turns blue. Did the placebo also turn the urine of the control group blue? If not, it would be pretty easy to know if you were receiving the drug or the placebo.

I cannot find any evidence that TauRx has been granted approval by the FDA to conduct a Phase 3 clinical trial. Impossible to raise capital under those circumstances.

One has to wonder if the Alzheimer's Association performed any due diligence prior to accepting the paper for ICAD 2008. After all, it was the Alzheimer's Association acceptance of the science and press release that triggered the news frenzy that followed.

Perhaps they can inform us of the current state of affairs, and why the clinical trials are not moving forward.

Rember was heralded as a possible cure for Alzheimer's.

Professor Wischik has been working on this for 26 years, his words.

Medpage Today did run an excellent report on rember and the claims of the scientist back in July, 2008.

FAQ about Rember and TauRx Therapeutics

Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

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Original content Bob DeMarco, the Alzheimer's Reading Room

Antipsychotics, Aricept, and a Good Point Guard

2010-01-28T14:44:00.004-05:00

Whether its Alzheimer's disease or any other illness you need a great point guard......

By Bob DeMarco
The use of antipsychotic drugs to "control" difficult behavior, agitation, outbursts and sometimes combative behavior of dementia and Alzheimer's patients is soaring. Sales of newer antipsychotics like Risperdal, Seroquel and Zyprexa have more than tripled to $14 billion, up from $4 billion in 2000, according to currently available statistics.

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Most of this increase can be traced to prescriptions in nursing homes. Current estimates indicate that about one-third of all nursing home patients have been given antipsychotic drugs. Yikes.

There are at least seventeen studies of elderly people with dementia that compared patients taking an anitpsychotic drug with those taking a placebo. These studies indicate that patients taking the drugs died at a rate almost two times the rate of patients taking the placebo over the course of the study.

If you look beyond the obvious in the studies being done on antipsychotic medications and dementia you will be surprised to learn that 30 to 60 percent of patients in the placebo groups improved.

You might want to read the above again. Antiphsychotic medications can kill you at a rate twice that those not taking the drugs. Thirty to sixty percent of patients improved when they received no drug -- a placebo.

It seems to me that the likely explanation of why patients receiving the placebo responded positively was because they are receiving lots of personal "attention". Tender loving care.

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I am not a doctor so I decided to look in my copy of The Alzheimer's Action Plan: The Experts' Guide to the Best Diagnosis and Treatment for Memory Problems to see if it contained any advice on how to deal with this issue. I was pleased to learn that the federal government has developed guidelines that doctor's must follow when prescribing these drugs.

The guidelines** cover the following mistakes that are often made by doctors:

prescribing antipsychotic drugs to treat minor behavior problems such as occassional insomnia, mild anxiety, or wandering

prescribing an antipsychotic drug over the telephone without seeing the person

start someone on an antipsychotic drug without going over the risks of the drug with family members

recommend a combination of antipsychotic drugs

continue antipsychotic drugs for months after the behavior has improved

put someone on antipsychotic medication but fail to monitor for neurological problems such as stiffness or tics, weight changes, or hormonal or cholesterol problems

promise the drugs can keep Alzheimer's from getting worse as quickly

say the newer anti psychotic medications are far superior to the older (less expensive) versions.

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In our case, early on my mother was evidencing peculiar behavior(s) that I had never seen in her before. She was flying off the handle, she was being mean to me, and she was saying things that I cannot repeat in print. I knew something was dramatically wrong. But, I was clueless as to what was wrong.

Welcome to the world of the Alzheimer's caregiver. The vast majority of Alzheimer's caregivers come to the task with little or no education about Alzheimer's disease, little or no understanding of the disease, and are often ill equipped to deal with the changes in behavior that almost always come with Alzheimer's disease. Most often we are left to learn on the job. And, learn on the job we do. ______________________________
We had a doctor that tried to put my mother on an antipsychotic medication before she was diagnosed with Alzheimer's. I said, "No". I had read several of the articles on this issue and I wanted to make sure that I didn't do anything that would worsen her situation before we actually knew the real extent, cause, and diagnosis of her illness.

Eventually, we identified a wonderful personal care physician that was familiar with dementia and Alzheimer's disease. He took us through all the identification steps and then prescribed Aricept. The Aricept helped. There are several studies that show that drugs like Aricept are being underutilized in the treatment of Alzheimer's.

Research shows that 10 to 20 percent of Alzheimer’s patients had noticeable positive responses to the drug, and 40 percent more showed some cognitive improvement, even if it was not noticeable to an observer.

______________________________ I am sad to say that over the years I have seen personal caregivers put patients on antipsychotic medications as way to "smooth out" behavior. Unfortunately, when someone in an early stage of dementia is put on an anitpsychotic their health can deteriorate-- fast. I have seen this happen more than once.

Personal care doctors hasten to use antipsychotics instead of Aricept without a psych consult, geriatric consult, or neurological consult. Like it or not, this is the sad state of affairs in much of American today. Its all about money.

The healthcare companies want the point guard, the personal care doctor, to keep costs down and they provide them with incentives to do so. This means persons suffering from dementia don't get the appropriate test to make a proper diagnosis.

In basketball, a great point guard is on the floor to distribute the ball. The point guard touches the ball and holds the ball more than any other player on the floor. A great point guard is often measured by the number of assists he gets each game. A great point guard makes all the players around him better.

Whether its Alzheimer's disease or any other illness you need a great point guard. Most basketball fans can name the great point guard off the top of their head. The list is shorter than one hand. There are more than six handfuls of starting point guards in the NBA. Get yourself an All Star point guard. Don't be lazy.

Also see: Antipsychotics, J & J, Kickbacks to Nursing Homes, the Feds Step In

**Source: The Alzheimer's Action Plan, page 324

Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.