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Popular articles on the Alzheimer's Reading Room
- Worried About Alzheimer's Disease ? Dementia and the Eight Types of Dementia
- H1N1 Flu Virus Everything You Need to Know
- 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
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- 2009 Alzheimer's Disease Facts and Figures
Original content Bob DeMarco, Alzheimer's Reading Room Read More....Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. The Alzheimer's Reading Room is the number one website on the Internet for news, advice, and insight into Alzheimer's disease. Bob has written more than 950 articles with more than 8,000 links on the Internet. Bob resides in Delray Beach, FL.
Thursday, November 19, 2009
How To Beat Alzheimer's Incontinence
We are on a three day roll. No pee pee. No pee pee pajamas. No pee pee underwear. No pee pee pants......
Bob DeMarcoAlzheimer's Reading Room
Editor
My mother suffered from urinary incontinence long before I moved to Delray Beach to take care of her.
My sister Joanne was the first to notice the problem -- 8 or 9 years ago.
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Urinary Incontinence (UI) is a stigmatized, underreported, under-diagnosed, under-treated condition that is erroneously thought to be a normal part of aging. One-third of men and women ages 30-70 believe that incontinence is a part of aging (National Institute of Health, NIH).
You could put everything I knew about urinary incontinence in a thimble before I started to focus on this problem. Reading and learning about the problem helped me come to the conclusion that we could do something about it. A little education is always helpful.
I want to make something clear. I did not arrive at this current solution to urinary incontinence over night. It took years.
Once we finally developed the current solution, it still took many months before it started to work effectively. Here is some good news. The solution is becoming more and more effective over time.
My solution is not perfect. It does not work every single day. It does not work every single night. I can say this with some confidence -- we no longer experience the flood. Now its more like the little tiny accident.
When we have a problem with incontinence during the day it usually happens because I am tardy or less than perfect in following the program.
If you decide to try this, it is going to be a lot of work. You will need to tailor my solution to fit you own needs or you own Alzheimer's sufferer.
If you are not ready to give this program everything you have to give -- you will likely end up frustrated, or quit.
If you make this work you will end up with a wonderful feeling of accomplishment, and frankly, keep more of your hair.
If you really want to solve the problem of urinary incontinence, I suggest you try a little role reversal.
If you were the one with Alzheimer's and urinary incontinence, how would you want to be treated?
Would you want to be yelled at? Treated like a baby? Would you want to listen to someone constantly complain about how you are peeing all over yourself?
Would you want to feel all those bad vibes being directed at you?
I tried many times to do something about incontinence over the years. All false starts. I gave up every time.
Finally, the problem was so bad that we were using 14 sets of pajamas and 24 panties. My mother was blowing through 3 pajama bottoms a night. Day time, same story with her cloths.
All I can say is, that is a lot of wash.
My mother was suffering from incontinence from day one.
I turned to everyone I knew. I listened to their ideas and advice. I turned to women of all ages.
Most of the advice centered around two solutions -- pads and adult diapers.
I have to laugh at myself now as I remember my first trip to the store. I figured I would go in and grab what I needed and get on with the task at hand. Keep in mind I am a man.
Well the aisle that contained these products in Walmart was gigantic. It just went on and on. I think I spent more than 30 minutes trying to figure out which might work for the problem at hand.
In a way, it was mesmerizing. Oddly, since I am a curious person it was interesting to me. Later I thought to myself, wow, this is one big problem.
I decided to try the adult diapers. At the mention of this, my mother pitched a fit.
I would get here to put the diaper on grudgingly. As soon as I wasn't looking she would take the diaper off.
If you are an Alzheimer's caregiver you can already imagine the things she was saying. Some of them not very nice.
Let me tell you what I was accomplishing -- I was making my mother miserable and mean. This in turn was making me miserable. The dreaded stomach ache.
Here is what I started to learn.
My mother did not believe there was a problem. It was embarrassing to wear a diaper. It was a sign of old age. If she didn't think there was a problem she would never accept the solution to the problem.
I thought to myself, well if there wasn't a problem I wouldn't wear a diaper either.
I gave up.
Here we were again. 14 pair of pajamas, 24 undies.
Now I decided to try the pads, the inserts. I thought I had a new idea that would work.
I convinced my mother's elderly friends to talk to my mother and tell her how they used the inserts, pads, and diapers. How it was a normal part of getting old. I coached them to be very enthusiastic and tell her how great this solution worked. I asked them to smile and laugh all the way.
My mother listened -- in went the pad.
They went home and out came the pad. I know they say that the person suffering from Alzheimer's will eventually get use to the pads and every thing will be beautiful.
I tried and I tried and I tried. I gave up.
I don't know why I didn't think of this sooner but I finally decided it was time for a trip into the Alzheimer's bunkhouse. I took my big newspaper pad with me and wrote -- problem incontinence -- right in the middle of the page with a big circle around it.
Then I started writing everything I could think of and remember about this problem all around that circle.
Then like magic like the light bulb went on in my head. I thought to myself, if I can do this I'll be like the Leonardo da Vinci of urinary incontinence (I'm Italian by the way).
To continue reading -- go here.
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Sunday, November 8, 2009
The Validation Breakthrough: Simple Techniques for Communicating with People with Alzheimer's and Dementia
If you live with or care for someone with Alzheimer's or dementia, you should consider reading this book. The Validation Breakthrough will help you understand why Alzheimer's sufferers say what they say and do what they do. This book helps you understand communication that is often difficult to accept and hard to interpret.
You might get the impression from the title that this book is only for professionals -- this is not the case. The validation theory works and it is simple to apply.
The case studies are invaluable and provide you with specific situations that you are sure to encounter.
I am convinced everyone involved with elderly parents suffering from dementia or Alzheimer's will benefit from reading this book.
You will certainly reduce stress by learning these techniques.
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Reviews
By Martine Davis
If you live with or care for someone with Alzheimer's or other age related dementia, you must read this book ! What an eye-opener! For the first time I finally understood why Alzheimer's patient say what they say and do what they do. It all makes so much sense now. This small book reads quickly and is full of examples of real people who have been helped with the author's techniques. It shows you how to handle the blaming, accusing, name-calling and the repetitive motions ... It also explains why the way most of us react to Alzheimer's patients actions actually worsens the situation and can cause them to progress to a more advanced stage of Alzheimer's disease ! This book could extend the relationship between the patient and caregivers and should be MANDATORY reading for all staff working in nursing homes and long-term care facilities !
By J. Summers, CNA (Alaska)
An excellent book for both the professional caregiver and families trying to deal with this sometimes unfathomable disease. Gives practical ideas and techniques for helping people with dementia deal with issues from paranoia and blaming to sadness and helplessness. I have just begun to explore these techniques and am finding they work so well that they should be mandatory training for nurses, PCAs and CNAs. Instead of treating our seniors like they are children we at last have a way to talk to them on an adult level, tap into where they are at, deal with the problem at hand and we all come out better for the experience.
Reviewer: A reader
More and more relevant as we care for aging parents. With a title like this one might think: "Boring" Absolutely not so! Right from the start, the stories of the people are so real and so touching that one of my friends said she was moved to tears. She was so sad not to have known about this way of relating to her father. "It works," she told me. "Validation Breakthrough" shows a new way of relating to people with dementia of Alzheimer's type. This approach is effective in helping the person to clear up unresolved issues in their lives. You do not have to be a professionally trained therapist to use validation. Validation will make the relationship more rewarding for both people. It is not hard to learn and makes wonderful sense. Some readers may want to ask new questions of care facilities (like nursing homes) as the validation approach will keep loved ones from slipping into a vegetative state. It will also make the care much kinder, and more rewarding for the care givers
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Tuesday, October 20, 2009
H1N1 Flu Shot, Alzheimer's and Dementia -- Our Decision on the Shot
The facts in this case are that the H1N1 flu virus is spreading fast, and we really haven't seen anything like it. If you watch the 60 Minutes video you will understand what I am saying.
As an Alzheimer's caregiver, I have to decide whether or not my mother will take the shot.
Bob DeMarcoAlzheimer's Reading Room
Editor
Many Alzheimer's caregivers are trying to decide whether or not their loved one should get the N1H1 flu shot.
In addition, it seems that many elderly people are reluctant to get the shot, believing that the standard flu shot they have received is "good enough."
It is now clear that the N1H1 flu is a world wide pandemic, and the number of cases of the N1H1 flu are rising dramatically worldwide. The United States is no longer immune.
Yesterday I wrote two stories about the H1N1 flu. I suggest you read them to get up to date on the H1NI flu virus and the current situation.
2009 H1N1 Flu (Swine Flu) Situation Update
60 Minutes H1N1 is Spreading Fast and Can Be Fatal (Video and Text Versions)
These stories indicate the seriousness of the situation, and the risk you might be taking by avoiding the shot.
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In graduate school I studied risky decision making for 4 years. I came to understand how people make risky decision. I also came to understand how people put off making a risky decision if they can -- this is often the easiest thing to do.
Often risky decision are a result of cultural values.
For example, when a newly licensed 16 year old drives fast and recklessly, he is considered to be cool by his peers.
When that same 16 year old is 40 and married with a couple of kids, when he drives fast and reckless he is considered to be an idiot by his peers.
Another example of risky decision making occurs when a person can "diffuse" the responsibility. How many times have you heard a young person defend themselves by arguing that their friends did the same "dumb" thing. This rarely holds water. If you do a bad thing it doesn't become a good thing because other people did it.
I can see that many elderly people are talking to each other and deciding they won't get the H1N1 flue shot. Safety in numbers here. If Mary isn't getting the shot, then I won't get the shot.
The problem with this kind of decision making is that the conclusion is not based on an examination of the facts.
The facts in this case are that the H1N1 flu virus is spreading fast, and we really haven't seen anything like it. If you watch the 60 Minutes video you will understand what I am saying.
As an Alzheimer's caregiver, I have to decide whether or not my mother will take the shot.
This decision is complicated by several factors. Nobody knows if the shot it likely to worsen her Alzheimer's. There isn't any history to go on in this case.
I already know from my own research and talking to hundreds of caregivers that when an Alzheimer's patient gets an infection they usually drop down the Alzheimer's staircase. I also know from discussion and my own experience, when a person falls down the Alzheimer's staircase, they can't get back up to the step they were on.
See -- Infection Can Hasten Alzheimer's Memory Loss
Here is another fact that is on my mind. People born before 1950 are at the lowest risk for the N1H1 flu virus.
It appears that H1N1 has its seeds in a virus that first appeared in 1918. As a result, people that were exposed to those viruses are at lower risk.
"There were similar viruses circulating in the 1930s and the 1940s. And therefore people who were born before 1950 have antibodies, have a protective immune response against such a virus, against the novel H1N1 virus," he explained. "And therefore the older people are better protected against the novel H1N1 virus than are young people."After reading this my first reaction was -- my mother doesn't need the flu shot.
"You lose that protection if you're born after what year?" Pelley asked.
"About 1950," Palese said.
I then mentioned this to our personal care physician. She said, what if those antibodies in your mother died. Yikes. I had not considered likelihood. This is what I call looking beyond the obvious when making a decision.
I should also mention here that the virus that appeared in 1918 killed 50 million people. 50 million.
The N1H1 virus can travel about ten feet. If you get within 10 feet you have been exposed to the virus. This alone worries me.
By now you get the idea that I have been reading-up before making the decision. I have come to a a conclusion.
If my mother gets the N1H1 flu virus, I am convinced it will send her spiraling down the Alzheimer's down staircase, maybe to the last couple of steps. If she get the nasty pneumonia that can come with N1H1 it could end up killing her.
Too much risk for us. We will be getting the shot. Keep in mind, I have to get the shot to help insure that I am here to care for my mother. You might want to consider this also.
If you read this far, I am not recommending that you get the H1N1 flu shot. I am recommending that you look at the facts, and then decide what is best for you.
I also recommend that you send the articles I listed above to your friends. There is not a great deal of information available on H1N1 at the moment. Much of the information that is circulating by word of mouth is less than factual.
You know as well as I do that most people are resistant to change. Taking the N1H1 flu shot is about accepting change. This is not so easy to do for most people.
Bottom line? The best way to make a decision is to examine the facts and then decide. The worst way to make a decision is to arrive at your decision because the person that lives next door to you decided, by the seat of their pants, not to get the shot.
If the flu strikes the fact that your friends didn't take the shot either is not going to be a good excuse.
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Saturday, October 10, 2009
Popular Articles on the Alzheimer's Reading Room -- September (Top Landing Pages)
Test Your Memory (TYM) for Alzheimer's or Dementia in Five Minutes (#1 June, July, August, September)
A new cognitive test for detecting Alzheimer's disease is quicker and more accurate than many current tests, and could help diagnose early Alzheimer's, dementia, or mild cognitive impairment.
To continue reading go here.
Dementia and the Eight Types of Dementia
Dementia is a an illness that usually occurs slowly over time, and usually includes a progressive state of deterioration. The earliest signs of dementia are usually memory problems, confusion, and changes in the way a person behaves and communicates.
To continue reading go here.
Five Ways to Keep Alzheimer's Away
A recently released study showed that regular exercise is one of the best ways to reduce your risk of dementia and can help slow progression of Alzheimer's disease. Less well known is the fact that if you have a big belly in middle age the chances that you could suffer from dementia are tripled.
To continue reading go here.
The Combination of Aricept and Namenda Helps Slow the Rate of Decline in Alzheimer's Patients
"The results of this study should change the way we treat patients with Alzheimer's disease. Cholinesterase inhibitors are approved for use in mild to moderate dementia, while memantine has been approved for advanced dementia. But it looks like there is an advantage in prescribing both drugs as initial treatment."--John Growdon, MD
To continue reading go here.
A Simple Three Minute Test Can Detect the Earliest Stage of Alzheimer's Disease
The study shows that the combination of a very brief three-minute cognitive screening test, called the Mini-Cog (MC), with a Functional Activities Questionnaire (FAQ) -- administered to a family member or friend -- could accurately identify individuals with MCI and undiagnosed dementia.
To continue reading go here.
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Popular articles on the Alzheimer's Reading Room
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Original content Bob DeMarco, Alzheimer's Reading Room Read More....
Saturday, September 26, 2009
The Metamorphosis of This Alzheimer's Caregiver (Part One)
My name is Bob DeMarco, I am an Alzheimer's caregiver. My mother Dorothy, now 93 years old, suffers from Alzheimer's disease. We live our lives one day at a time.
I am an Alzheimers caregiver, I am the One, and if you are here you are not Alone.
To start, I am a curious person. So, when I want to know more about something I really dig in. Take it apart and put it back together.
I'm fortunate in two ways. I picked great parents, and God and my parents blessed me with an ability to read fast, and absorb information.
My brain is wired to view everything as a system. This allows me to see all the parts when I encounter something new, or when I am trying to figure things out.
When focused, I am goal oriented.
When I first learned my mother was suffering from dementia, I quickly learned you could put everything I knew about dementia and Alzheimer's in a thimble.
So, I started reading. The more I learned the more I wanted to know. I learned a great deal about Alzheimer's disease--including the science. It helped me understand a very mystifying disease. It helped me to put a frame around something that is difficult if not impossible to describe.
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At the beginning of my travels with Alzheimer's, I had to get over the shock when the diagnosis of dementia came. That took what seemed like a minute, but it was over a year.
Once I could think clearly, I decided I needed a plan. Some of it was easy--exercise, nutrition, and creating a stable environment. Finding a great personal care physician was a bigger challenge. I'm thankful I somehow realized how important this decision would be for us.
Exercise is a critical component of the care-ee, care-er paradigm. I have written often about how my mother is often "dull" and can barely walk as we head to the gym. And how, she undergoes an almost impossible to believe physical, psychological and emotional transition by the time we leave the gym.
I have not spent as much time explaining the importance of exercise for the caregiver. In order to function as an Alzheimer's caregiver you are going to need an enormous amount of energy.
The only way I know to increase the energy level is with vigorous exercise and good nutrition. As a caregiver, you need to understand that more than 40 percent of Alzheimer's caregivers suffer from depression. Exercise is an important component in the battle to keep depression away.
I am asked daily how I care for my mother, and attend to this blog. Well, I have a 17 hour day, no naps. You need lots of energy to keep that kind of schedule. I guess it is not well understood but you get more energy, not tired, when you exercise--hard.
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I continue to learn more and more about Alzheimer's each day. I continued reading and talking to those who came before me. Over time, I realized how difficult it was to find information that really helped me do my day job--living Alzheimer's from the front row.
Frankly, I read thousands of articles and all the books. I did get a good piece of information here, and a good piece of information there. This took years. There really is no one single place to turn to to get the kinds of on the job information you need to get through the day as an Alzheimer's caregiver.
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When I finally learned that I was an Alzheimer's caregiver; I realized I needed to define my role as a caregiver. Thinking of myself as a caregiver made me feel good--it made me feel good about myself. My first blog was called, I am an Alzheimer's caregiver. I used that blog to start getting a handle on the enormous amount of information I was acquiring, and to define myself. I guess you could say from those seeds came the Alzheimer's Reading Room.
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One day, I met two wonderful people--by chance. They listened to me, shaking their heads up and down (saying yes nonverbally). When I was done venting, they told me about their own round trip ride with their mother who suffered from Alzheimer's.
That day I learned one of my important lessons, I was not alone. This realization lifted a thousand pound weight off my back. It allowed me to really start thinking more clearly about developing a plan to take care of my mother.
I already knew from my life prior to caregiving--in order to succeed you need a vision, a mission, and a plan to bring that vision to fruition. I started developing a vision of how I wanted life to be for my mother and me.
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Soon after encountering those two wonderful people that taught me I was not alone, I had a set back that almost sent me into the black hole--depression.
My mother had been buying lottery tickets daily for 20 years. Cash 3, Fantasy Five, Lottery. And, those crazy scratch off tickets. I got what I thought was a great idea. Instead of buying them everyday, why not buy all of them once a week. I started doing that on my own--for my mother.
Then the worst day ever came. I took my mother into the store. I handed her the plastic envelope with all the lottery cards and the money and said--go get the lottery tickets. She had no idea what I was talking about. She said where? I pointed--over there, she didn't move. I took her hand and walked her over to the counter. I said, go ahead. She said, what do I do? She didn't know what to do (this took place four and a half years ago).
At that point, I felt like I was being electrocuted. Later that day I started to feel disoriented. At home, I couldn't shake a feeling of helplessness.
I am a thinker, and was thinking about what I should do. But instead of a plan, I kept thinking we are near the end. She won't know me soon. She is going to be laying in bed, she won't be able to eat. All day and all night this was all I could think about. The stress was enormous.
I did feel like I was going into the black hole of depression. I felt myself fighting.
Then miraculously I learned one of the most important lesson of them all. You Are the One.
We were in the doctors office, the office of our wonderful doctor--Dr. Carlos Chiriboga. I was explaining to him what happened and how I was feeling.
He explained to me that if I didn't let my mother do things, she would forget how to do them. In other words, it was not necessary, nor was it a good idea for me to be doing everything for her.
He then stunned me. He said, You Are the One. You know what she can and cannot do--so if you think she can do it, let her do it. He told me I might get criticism, but not to let it deter me.
I went home and thought about this. Sure enough, the thousand pound weight was off my back (again). Once again, I felt empowered.
My new mantra became--I am an Alzheimer's caregiver, I Am not Alone, and I Am the ONE. I recite this mantra when I wake up in the morning, and before I go to bed. I look at myself in the mirror while doing this. I always smile.
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As time went on, I started to get a new vision. Soon, I started doing lots of things that were out of the box. Amazingly, just about everyone of them worked.
Imagine my 88 year old mother no longer going to the Silver Sneakers class, but working out with me in the gym. I can't tell you how many people--all women--that yelled at me, and told me to get my mother off the treadmill and on to a bike. Great in theory, and I had tried it. She would peddle for 15 seconds and then stop.
I learned to hold my hand up, palm out, when these people came at me, and not say a single word. I just looked them right in the eye. Until they walked away. I thought about what Dr. Chiriboga has told me--don't let anyone deter you.
I'm the one, and I knew my mother could walk on the treadmill even tough at times it looked like she was going to keel over. Then she would stand up straight and start walking. You might not believe this but around the six minute, 30 second mark every time she would start bending over like she was going to fall. At the 7 minute mark she would stand straight up and start walking. It happened every time for years. I guess it looks kind of ugly. To me it is all part of a pattern.
If you thought that was crazy then imagine the look on the faces of the people in the gym when I started putting my mother on the weight machines. Amazingly, my mother hates the treadmill, she loves the weight machines. She cannot wait to do the shoulder pulls, chest pulls, etc. She doesn't really like the leg machine.
By the way, after a while, one by one people started coming up to me in the gym and praising me. They usually say--you are a good son. Sometimes they want to talk to me. People that see us all the time, smile and talk to my mother. It all came together very nicely.
I still get the occasional person that wants to rain on our parade.
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I didn't realize it at the time but I was undergoing a real metamorphosis as a caregiver. In the beginning, the first stage, I was just trying to accept Alzheimer's. Get out of denial and get on with the important parts of caregiving.
Then one day--a couple of years in--I came to a realization--it was time to say NO to Alzheimer's. I decided to fight.
I decided I would not accept the crazy behavior, the incontinence, and I would not continue to live in a shell. Instead, I would find ways to change things.
First, we would go out in the world and resume living our life the way we had before the diagnosis. Second, I would find a new way to communicate with my mother. Third, I would identify each problem that comes with the disease and tackle it head on.
Change, not acceptance.
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One of the most important observations I made was that my mother had very well defined patterns of behavior.
- How she walked on the treadmill,
- How she spit venom at me with her words,
- How she woke up at 1:25 AM, 4:30 AM,
- How she wanted to start cleaning the house at 9:37 PM,
- How when she would get mad at me, go into her room, then would come out of her room at 7:09 PM,
- How Monday and Tuesday's were good days,
- Wednesday the downtrend started into Thursday,
- How she would go in here room and curl up into a ball on Thursday and not come out until Friday.
I started to wonder if I could change these patterns, and change them into positive patterns. I'll answer that question right here--Yes you can. I'll be writing about how I did it soon.
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I am an Alzheimers caregiver, I am the One, and if you are here you are not Alone.
End part one.
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Original content Bob DeMarco, Alzheimer's Reading Room Read More....
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