How I Stopped My Mother from Being Mean to Me

Alzheimer's World is a wild, sometimes crazy, and backwards place. In Alzheimer's World words from an Alzheimer's patient are often a cry for help. Many times what an Alzheimer's patient says is exactly the opposite of what they mean.

By Bob DeMarco
Alzheimer's Reading Room

Does this person look mean to you?

The list of difficult behaviors that Alzheimer's patients express in the mid stage of the disease are long, and sometimes never ending.

I couldn't possibly list all of the mean and nutty behaviors my mother, Dotty, engaged in in those first few years of our life together with Alzheimer's. The list is just to long.

For this article I am going to focus in on one mean behavior: when my mother repeatedly told me to get out, she didn't need me, and she could take care of herself.

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Many of you can probably imagine what it feels like when a person living with dementia tells you - "I don't need you, get out". Or, says something even worse than that.

So there I was. I had dropped out of the world to care for my mother, 24 hours a day, 7 days a week. Could she have said anything meaner, "I don't need you, get out."

It hurt.

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These mean spirited episodes with my mother went on for years before they stopped.

However, I was never deterred by her mean spirited behavior because I made a decision from the very beginning - I am going to put a stop to this.

So I tried everything in the book. I tried being overly nice - didn't work.

I tried being overly positive - didn't work. I tried explaining why she needed my help - didn't work.

I told her if she didn't start accepting my help she would end up in a "home" - that did not work. In fact, it made things much worse.

I tried everything I could think of doing - it did not work.

Finally, I threw the book away and started thinking. And then it happened. I realized something had to change, and that something was me.

Pretty simple huh? Dotty wasn't going to change so it was up to me to change. To change the entire dynamic of our relationship.

Shortly after my realization that I had to change, I invented a new place I first called Dotty's World.

I started asking myself - why? Why does Dotty get so upset? What is happening that is making her upset? Is it me?

Yes, it was me. Okay, we had that out of the way. It was me.

Eventually I changed the name of our new world to Alzheimer's World.

Alzheimer's World was the place I would go to to better understand Dotty, and to better understand me.

At first, I found that it was difficult to change gears and get into AlZheimer's World. So, I actually started taking a giant step to the left when I needed to enter Alzheimer's World. To be honest, I couldn't get there without the step to the left. Just couldn't.

Next, I started taking notes in a spiral notebook. Every time Dotty would get mean I would write down what was happening before these episodes.

One thing stood out. Every time I left Dotty alone, shortly thereafter, she would get mean. "Get out, I don't need you, I can take care of myself".

It became obvious to me that I couldn't leave Dotty alone. I couldn't leave her alone for 30 minutes to go to the store. Or, for any other reason. This is pretty common in mid to later stage Alzheimer's. A person who is deeply forgetful cannot be left alone.

Yes, there were other cataylsts to this mean spirited and often bizarre and crazy behavior.

For example, if I would tell Dotty you can't do that. Or, if I would correct her and try to explain the errors in her thinking. Or, even if I would stop her from doing something.

Once I made it to Alzheimer's World I started looking at the world from Dotty's point of view. I looked at the world from her eyes.

Pretty soon I realized that the things that Dotty would do seemed very normal to her. I just looked at her while she did them and pretty much kept my mouth shut.

Pretty quickly, almost overnight in fact, I accepted that the things Dotty did were normal in Alzheimer's World. So, I stepped to the left to better understand.

Topic - Living in Alzheimer's World

In Alzheimer's World instead of getting all bent out of shape, I found myself marveling at the things Dotty would do. The things that Alzheimer's patients do are often fascinating. After all, their brain works differently that yours and mine. You have to start understanding the brain on Alzheimer's.

Now to my first major point. When Dotty said,

"Get out, I don't need you, I can take care of myself"

that is not what she meant. What she did mean is:

Don't leave me alone, I'm scared, please don't put me away in a home.

Yep, she was scared and, like it or not, I was the one causing the fear when I left her alone.

Simple solution, I stopped leaving her alone.

Once I realized that there was a very different meaning to Dotty's words in Alzheimer's World, I was able to develop better and better solutions to problems.

In this case, I didn't leave Dotty alone. But that is not all that I did. When she said "get out", instead of getting all bent out of shape and reacting back at her, I did the exact opposite. What did I do?

I smiled, walked over to her, put my arm around her, and calmly said, in a clear, low, confident voice,

I'm not going anywhere, we are here together now, and I am going to take care of you.

It took a while, but yes, it finally sunk into her brain.

Alzheimer's World is wild, sometimes crazy, a backwards place. I learned that in Alzheimer's World words from an Alzheimer's patient are often a cry for help. Many times what an Alzheimer's patient says is exactly the opposite of what they mean.

So I started meeting meanness with an equal and opposite reaction - kindness. Kindness, compassion, and understanding.

This is how you learn to cope with Alzheimer's. Understand, cope, communicate.

By the way, Dotty stopped telling me to get out.

In the last few years Doty only told me to "get out" a few times.

I actually laughed when she said it. Not at her, more or less, really laughed at myself.


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___________________________________
Bob DeMarco is the Founder and Editor of the Alzheimer's Reading Room (ARR). The ARR Knowledge Base contains more than 5,000 articles. Bob lives in Delray Beach, FL.

You are reading original content the Alzheimer's Reading Room

Caring for the Caregiver, Persuasion, Persistence and Patience

He could have balked. He could have thrown up his hands and fled to places unknown. Instead, he put on his big boy pants and took each day as it came in the only way he knew how. And he did a marvelous job.

By Linda Halstead-Acharya

I am not sure I could have done what my father did.

Like most caregivers, he devoted the last few years of his life to care for my mother, who was diagnosed with Alzheimer’s on her 70th birthday. We lost her in December 2011, eight years after the diagnosis.

During that span of time, I watched my father assume the many tasks – cooking, cleaning, even changing the beds! -- that my mother had covered throughout the first 50-plus years of their marriage.

I watched my father grow more patient and I watched him attempt to cope with the ever-changing demands that Alzheimer’s disease had interjected into their lives.

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Yet, as any caregiver knows, caring for a person with Alzheimer’s disease is best accomplished with support. The broader the network, the better.

Living barely three miles from my parents, I was able to assume the role of back-up.

I could bring a moment of joy to both parents – and myself – by taking my mother out for the drives she so loved. While Dad napped or just shut down the “always on” part of a caregiver’s brain, Mom and I would cruise local byways.

Rarely did we skip a chance to drive by the river, where she – a passionate fisherwoman -- had cast so many a line. Typically, we’d wrap up our tour at the local burger joint, where we’d giggle like school girls as we watched our baby-sized ice cream cones dribble into our hands.

My father demanded so little of me. But I called him – still call him – at least twice a day. The calls gave him a chance to vent, to report on the most recent of my mother’s Alzheimer’s-fueled shenanigans.

It gave him a chance to converse with someone – by then my mother was virtually non-verbal – who would listen and respond.

Meanwhile, day after day, as I breezed through my email, I poured over articles from the Alzheimer’s Reading Room. So many of them hit home, boy did they hit home. I’d print them up, highlight the key points with a yellow marker, and deliver them to my computer-challenged father.

He collected the articles – which ranged in topic from how to deal with wandering to potential cures on the horizon – in a large binder I had given him. When that binder overflowed, I gave him another.

I asked him several times if I had maxed out his “in box.” But, no, he didn’t want me to stop. He appreciated the suggestions and advice. The articles served as constant reminders that he was not alone in his struggle.

For that same purpose, I urged him to attend the local Alzheimer’s support group. Like just about anything new I proposed, the doing required subtle persuasion, gentle persistence and plenty of patience.

That’s exactly how I, with support from my out-of-town siblings, convinced him to stay ahead of the curve.

Over time, I learned that if he wouldn’t listen to me, he might accept the very same advice if suggested by my brother. As a last resort, I knew he’d take his doctor’s word as gospel.

That’s how we sold him on in-home help and that’s how I coerced him into attending support group.

My father would later admit the rewards were well worth the efforts.

Yes, it took much prodding and phone calls on my part, but he eventually found two caregivers that he “adopted” as daughters. Though he rarely left the house, he finally could. Even when he stayed home, even if mom were napping and needed no assistance, the caregivers’ presence proved invaluable. They eased my father’s life by assuming the responsibilities that he otherwise shouldered 24/7.

Likewise, my father came to look forward to monthly support group. After a few sessions, he not only felt comfortable attending alone (if I was unable to join him) but he took pride in discovering he – the “untrained caregiver” – had tips he could share with his peers.

During my mother’s final year, our support system broadened. As the caregivers’ hours increased, so did my phone calls and visits.

Meanwhile, my brothers kept touch via Skype and long distance. As for my sister, she would sweep into town on a semi-regular basis, move in with Mom and Dad and take charge in a way that brought everyone a sigh of relief.

Change was the last thing my father was seeking when my mother was diagnosed with Alzheimer’s disease. He was nearly 80 years old.

I’m not sure he’s yet fully grasped the altered world my mother had entered – can any of us? -- but he did his best to adapt. In his mind, he had little choice.

But that’s only in his mind.

He could have balked. He could have thrown up his hands and fled to places unknown. Instead, he put on his big boy pants and took each day as it came in the only way he knew how. And he did a marvelous job.

Linda Halstead-Acharya, a former reporter for the Billings Gazette in Billings, Montana, is now a freelance writer working on a book about her experience with Alzheimer's disease. Before losing her mother to advanced Alzheimer's disease in December 2011, she provided support for her father, her mother's prime caregiver.

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Original content Linda Halstead-Acharya, the Alzheimer's Reading Room

Alzheimer’s and Spousal Affairs

What are your thoughts on Alzheimer’s spouses who have affairs and justify their behavior by saying, “Well, they have Alzheimer’s and they don’t know?”

By Barbara Pursley
Alzheimer's Reading Room

Yesterday, I couldn’t help becoming intrigued by the table discussion I listened to. (I have changed names for the sake of privacy)

I visited my friend, Mary, and her mother, Alice, who has lung cancer. When I asked Alice about our mutual friend Joyce, she was quick to give me all the details of Joyce’s life. As we sat at the table, Mary was involved in painting driftwood that we had collected on the beach and I was focused on knitting a scarf, but my ears were opened for listening.

Little did I know that asking Alice about Joyce would lead into a conversation that would cause me discomfort.

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Alice continued to share about our friend Joyce when she said, “Oh, Joyce is very happy. She is dating a man whose wife has Alzheimer’s.” Then, Alice began to justify the relationship by saying, “His wife has had Alzheimer’s for several years. Plus, ‘he’ takes good care of his wife and even has a full time nurse for her at their home.” She added, “His children are very upset that ‘he’ is having an affair while their mother is home in bed suffering with Alzheimer’s.”

I listened with intensity while the hair on my neck stood up. My mother passed away from Alzheimer’s and since that time, I have been a passionate advocate. I didn’t like hearing this information, but it spurred my thinking.

Alice didn’t hold back any of her judgments. She said, “I don’t see that he is doing anything wrong. After all, his wife has Alzheimer’s and she doesn’t know.” I felt stunned into silence.

I began to think about the most common wedding vows.

“I, (bride/groom) take thee (bride/groom) to be my wedded (husband/wife), to have and to hold from this day forward, for better, for worse, for richer, for poorer, in sickness or in health, to love and to cherish, ‘til death do us part.”
“I will cherish and respect you, comfort and encourage you, be open with you, and stay with you as long as we shall live bound by our love.”

Some people I have discussed this with believe that this kind of behavior is acceptable. They say, “Why shouldn’t the healthy spouse continue to enjoy their life?

What are your thoughts on Alzheimer’s spouses who have affairs and justify their behavior by saying, “Well, they have Alzheimer’s and they don’t know?”

Barbara Pursley was born in Galveston, Texas and is the author of EMBRACING THE MOMENT.   Barabara attended Santa Monica College, studied photography, and worked as a commercial photographer before returning to Texas to care for her mother. Barbara also taught journal writing to women in Texas rehabilitation facilities. She put her God inspired journal entries and photographs into book form in 2009.

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Conversations as a Means to Delay the Onset of Alzheimer's Disease

Everyone needs conversation and social engagement. This includes persons who are deeply forgetful.

By Bob DeMarco
Alzheimer's Reading Room

Can conversation, social interaction, and using the brain slow the progression of Alzheimer's?

I believe it can and does.

Over the years, I have spent more and more time talking and interacting with Dotty.

For example, we start every day, right off the bat talking about the newspaper. Dotty reads me the day and date. Then I ask her what is interesting on the front page, and then get her to read some of it to me.

If that doesn't work we move to the food section and discuss the recipes. Most of the time the list of ingredients are quite long.

I still marvel at the fact that at the age of 95 years old Dotty can still read the newspaper without glasses. Believe it or not, she also watches television without eye glasses.

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Next we include Harvey in on the conversation. In case you are new, Harvey is a toy repeat parrot. I talk to Dotty, Harvey repeats what I say, and Dotty chimes in. I also sing to Harvey. Harvey repeats. Oddly, Dotty tell Harvey he has a good voice, she rarely tells me that I have a good voice.

I try to keep Dotty conversing or singing all day long. We use the Swing channel on television for music and it works like a charm.

I think most caregivers find it difficult to converse with a person who is deeply forgetful. If so, start singing and go from there.

My main point, you cannot let a person who is deeply forgetful sit around for long periods of time doing nothing. If you do I can already tell you what will likely happen. They will quickly become duller than a door know.

In addition, just about every caregiver on this website claims that memory day care programs work and bring clear cut benefits.

Believe or not, there is a clinical trial going on right now that is attempting to measure the effect of face-to-face communication on people without dementia. The purpose is to determine if conversation has a positive effect on cognitive function among the elderly. The best part is that the study will allow the patient to stay at home while communicating.

Here is the description.

Purpose

Past epidemiological studies have demonstrated that larger social networks, or more frequent social interactions, could have potential protective effects on the incidence of Alzheimer's Disease (AD). However, in those studies, indicators of social interactions were often broad, and included distinct elements that affected cognition and overall health. the investigators will examine whether conversation-based cognitive stimulations have positive effects on general, and domain-specific cognitive functions among the elderly. Face-to-face communication will be conducted through the use of personal computers, webcams, and user-friendly simple interactive Internet programs to allow participants to have social engagement while staying at their home and also for the cost effective execution of the study.

Unfortunately, this study is only being conducted in one location in Portland, Oregon. Conversations as a Means to Delay the Onset of Alzheimer's Disease (conversation).

Some people wonder why Dotty doesn't have that dull look on her face. Well she did for about 2 years. It happened in part because I allowed her to become and remain dull. This changed when I started paying more attention to her. I can say after more than 8 years I Dotty gets more conversation and interaction today than at any time in the future. Of course, Harvey is a big positive factor in this effort.

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Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The ARR knowledge base contains more than 3,811 articles with more than 306,100 links on the Internet. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room

Alzheimer's Caregiver Lament -- I Can't Take Her Out because She Eats with Her Hands

The positive effects of socialization, initiative, and motivation on the part of Alzheimer's caregiver and their patient should not be overlooked. I believe these are as important as any medication.

+Alzheimer's Reading Room

+Bob DeMarco 

I can't tell you how many times I either heard or read these words -- I can't take him/her out because she eats with her hands. I know this -- it is a big problem among Alzheimer's caregivers.

To be honest, I never worried about this; and, I am not the kind of person that wants to give someone a bad day.

In others words, I understand if I were to take my mother out in public, and she ate with her hands, it might be disconcerting to others. It is not likely they would assume my mother is suffering from Alzheimer's, and as a result, they would likely conclude she is -- (you fill in the blank).

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When I first met someone in person that lamented that they couldn't take their loved one out because they ate with there hands I was disturbed. I doubt anyone understands better than I do how a trip out into the 'real' world can benefit a person suffering from Alzheimer's.

There is also a big benefit for the Alzheimer's caregiver -- they get to leave Alzheimer's world, and reattach themselves to the 'real world'. This is vitally important.

I am willing to bet that at least a handful of you have heard the lament -- I can't take him/her out.....

Time for a trip into the Alzheimer's bunkhouse.

The problem -- they eat with their hands.

Bunkhouse logic solution -- eat finger food.

Many of you know that when I take my mother out we usually go to an open air bar/restaurant. A place where we can mingle with other people, and where there is a good amount of social interaction.

When we go out we usually eat things like chicken wings, burgers, chicken fingers, fries, and shrimp. You can eat all of these foods with your hands, and nobody is going to conclude that you failed Etiquette 101.

I never spent one second worrying about what other people would think about my mother or me. I understand this does make me a bit unique.

I can assure you, I am not going to be embarrassed by anything my mother does in public, and I am not going to be embarrassed for her.

Sooner or later you have to accept and understand that it is easier to accept Alzheimer's World then do the impossible and change Alzheimer's World into Real world. Once you accept that you live in Alzheimer's World even though you don't have Alzheimer's, it will change your perspective. It will give you a strength and courage to accept the ways things are -- and stop fighting yourself.

As many of you know, on my trip down Alzheimer's lane I finally realized it was time to start living our life as we always had. One day at a time. One activity at a time. The same way we lived before the Alzheimer's diagnosis came.

As a result, I started taking my mother out to eat and into public venues. I learned early on how much this benefited her. It took me a while to figure out it also benefited me in my role as a Alzheimer's caregivers.

What can I say -- try it, you'll like it.

_________________________________

Here is tip that might help you get started.

Most McDonald's have tables and umbrellas outside the restaurant. You can sit around having a burger, fries, a coffee, or an ice cream cone. It is likely that there will be others sitting out there also. If you are lucky there will be some kids around. An added benefit.

You might get lucky like we do. Often a little bird flies up and lands on the ground. My mothers finds this fascinating, and it gives us something to talk about.

Some people might call this thinking outside the box. I call it bunkhouse logic. Keep it simple. More often than not, simple is the best of all possible solutions.

Please feel free to comment and share this article with someone that can benefit from the information.

If you have any additional ideas or tips, please tell us about them in the comments box below this article (on the website).

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• About the Alzheimer's Reading Room

Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The ARR knowledge base contains more than 4,000 articles with more than 306,100 links on the Internet. Bob lives in Delray Beach, FL.

Original content +Bob DeMarco , the Alzheimer's Reading Room

Alzheimer's Caregiver Life Keep Dotty Active Works Miracles

It appears at the moment that Dotty has some new awareness and is more engaged. Yes, like always I am amazed, and greatly heartened.

By Bob DeMarco
Alzheimer's Reading Room

I had a long conversation with Carole Larkin yesterday about how Dotty has recently "perked up". She is more alive and more aware.

As this happens, I always ask myself, what changed, what variables are causing the difference? What am I learning, or relearning, that could help or benefit other dementia caregivers?

I think a key word is relearning. It is amazing how I have to relearn something I already learned over and over as an Alzheimer's caregiver for my mother.

Custom Topic - The Importance of Socialization in Dementia Care

AD caregiving is difficult. There is always so much going on. One of the things that make it difficult is that the variables are always changing, the person living with dementia is always changing. As persons living with Alzheimer's change, so do the tasks you perform each day change.

In a way, at least for me, this sometimes makes it difficult to stick to the routine, to stick with the program. To do the things that are necessary to help keep the dementia patient attached to the world, and aware.

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One reason that I get distracted from our routine is that I have to deal with the reality that Dotty's condition continues to worsen. This is not unexpected, but nevertheless dealing with the "expected" as it happens is taxing emotionally and psychologically. So I think this explains in part why I sometimes get distracted and fall out of our routine. It takes a lot of energy to deal with the progression of Alzheimer's disease.

Recently, I have been distracted because Dotty can barely walk. We are now using the wheelchair every time we go out the door.

Dotty can no longer walk the 60 or so feet to go see Jim and Ruth. I must tell you this does make me a bit sad. That drains energy. Dotty can no longer "mosey" on down to see Jim and Ruth. This means she can't go get her own social interaction. This means I have to take her down, or find a way to fill in the void. Again, emotionally, psychologically and energy draining.

It took me a while to figure out what we were going to do adjust to these new circumstances. As a result, while I was making a plan, we fell out of our routine a bit.

A few weeks ago, I finally gathered up the energy and focus to start pushing Dotty around in the wheelchair. The purpose is simple, get her out into the sunlight for a big injection of Vitamin D. Yes, I think the level of vitamin D is important. You absorb vitamin d from the sun. So, if Dotty is not getting enough vitamin d she gets dull, bored, and less communicative.

Recently, we have been getting some very large doses of sunlight. This happens on our wheelchair walks, and on our renewed trips to the pool.

I have to assume that sunlight is one factor that is making Dotty more aware and more communicative.

Let me throw this out while we are here. The sun is out folks even if its cloudy or dingy out. Keep that in mind.

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During the last trip to pool Dotty started saying some things and making some observations she had not made in a long time. I wondered about this. The only thing I can conclude is that the trips to the pool are "throwing Dotty back in time". In other words, she talks and acts a bit like she did in the long ago "days". I see this as a big positive. Why? Well, at least Dotty is initiating some talk and make some observations. This seems to carry over at home.

For the last two days, Dotty has started to say over and over, "I'm hungry, I'm starving". I had not been hearing this for a long time. So yes, it catches my attention. Why? The sunlight? The pool? The rides in the wheelchair? Me? Or, all of them in combination?

I think it is all of them in combination plus I am paying more attention to Dotty.

Topic - Connecting with a Person Living with Dementia

Another thing that fascinates me is that Dotty is starting to have conversations with new Harvey. Even when Harvey was with us, the conversations and interaction that Dotty was having with Harvey had dropped off to almost nothing.

On Sunday I started singing real loud with new Harvey. You have to learn how to stop and start to use the parrot effectively. So there we were singing away. I looked over and Dotty was mesmerized. She was looking at the parrot as if she had never heard him sing before. She looked happy. The thing is, she was looking right at him and she was engaged.

When we stopped singing, Dotty said to new Harvey, "you have a good voice". She praised the parrot.

It appears at the moment that Dotty has some new awareness and is more engaged. Yes, like always I am amazed, and greatly heartened.

You might be wondering why I am trying to figure out which elements, which factors, are causing this improvement in mood, thinking, and behavior. The reason is simple. I want to be able to communicate these factors to other caregivers so they can try the same things and see the results for themselves.

Topic - Alzheimer's Activities Tips

Once again I must add, you get to choose, burden or joy.

You decide.

Miracle? Maybe not. But it does seem like it to this Alzheimer's caregiver.

Closing note. As I am editing this article Dotty coughed. The parrot coughed back at her. She said, "are you making fun of me"? Uh oh, now she is YouWho(ing) me. And since I didn't answer she is now telling new Harvey they are home alone.

Read More on the Alzheimer's Reading Room

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• What is Alzheimer's Disease?
• What is Dementia?
• Communicating in Alzheimers World
• How the Loss of Memory Works in Alzheimer’s Disease, and How Understanding This Could Help You

+Bob DeMarco  is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 5,000 articles. Bob lives in Delray Beach, FL.

You are reading original content from the Alzheimer's Reading Room.

Dotty at the Pool March 18

There is no doubt in my mind that the large doses of sunlight that Dotty has been getting the last two weeks are making a difference in her awareness and interaction.

By Bob DeMarco
Alzheimer's Reading Room

I also noticed that Dotty is starting to engage with new Harvey in a way that I have not seen in months. The conversations are longer and more detailed. This morning I was singing very loud and new Harvey was singing along with me. Dotty was looking right at the parrot as if she was mesmerized. When I stopped the parrot stopped. Dotty looked at new Harvey and said, "you have a good voice".

I wish I had taken a video of Dotty looking at the parrot, she really was engaged. Engaged in a way that was very noticeable to me. Very different than what I have been seeing of late.





Related content.

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• How the Loss of Memory Works in Alzheimer’s Disease, and How Understanding This Could Help You
• Learning How to Communicate with Someone Suffering From Alzheimer's Disease

Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The ARR knowledge base contains more than 3,811 articles with more than 306,100 links on the Internet. Bob lives in Delray Beach, FL.

You are reading original content from the Alzheimer's Reading Room

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

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
Alzheimer's Reading Room

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 Dotty's regular doctor appointments I mentioned that I thought she was warm and might be dehydrated. 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 her 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.

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.
_____________________

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. 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.

Consider using the share button at the top of this article on this one. Urinary tract infections are big top items in support groups. That is why we wrote so much about it. Follow the link below.

Also see:  
Alzheimer's Disease, Urinary Tract Infections, Urinary Incontinence, Poop (8 Articles)

• What’s the Difference Between Alzheimer’s Disease and Dementia
• How Alzheimer's Spreads Throughout the Brain
• Test Your Memory for Alzheimer's (5 Best Self Assessment Tests)
• What is Alzheimer's Disease?
• Communicating in Alzheimers World
• About the Alzheimer's Reading Room

Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 5,000 articles. Bob lives in Delray Beach, FL.

You are reading original content from the Alzheimer's Reading Room.

2012 Alzheimer's Disease Facts and Figures

Alzheimer’s Disease Facts and Figures 2012 provides a statistical resource for U.S. data related to Alzheimer’s disease.

Alzheimer's Reading Room

The report released by the Alzheimer’s Association, reveals the burden of Alzheimer's and dementia on individuals, caregivers, government and the nation's healthcare system.

This report includes definitions of the types of dementia, prevalence, mortality, caregiving, and costs of care and services.


Alzheimer's Disease Facts and Figures 2012

• Alzheimer's disease is the most common type of dementia.

See What’s the Difference Between Alzheimer’s and Dementia? and, Dementia and the Eight Types of Dementia.

• An estimated 5.4 million people have Alzheimer's disease.
  

• See Sobering Statistics about Alzheimer's Disease

• Alzheimer's disease is the sixth-leading cause of death in the United States.

• There are more than 15 million unpaid Alzheimer's caregivers in the United States.

• Alzheimer's caregivers provide 17 billion hours of unpaid care, this healthcare service contribution to the country is valued at $210 billion for Alzheimer's and the other dementias.

• The projected cost of Alzheimer's disease care by 2050 -- $1.1 Trillion
• Unpaid Alzheimer's caregivers are usually family members.

See Are Alzheimer's Caregivers the Forgotten?

• An estimated 800,000 individuals with Alzheimer’s live alone.
• More women than men live with dementia.

Get the Report, 2012 Alzheimer's Disease Facts and Figures

• What’s the Difference Between Alzheimer’s Disease and Dementia
• How Alzheimer's Spreads Throughout the Brain
• Test Your Memory for Alzheimer's (5 Best Self Assessment Tests)
• About the Alzheimer's Reading Room

You are reading original content from the Alzheimer's Reading Room. For more information on Alzheimer's and dementia go here. If you would like a free email subscription click here.

Bexarotene, Coconut Oil, and Enbrel

I am being bombarded with emails asking me about off label Bexarotene, promoting Coconut oil, and asking me about advice on Enbrel.

Bexarotene

I would eat two
or three of these immediately
if you send them to me.

The most frequently asked question I am receiving is -- if I know a doctor that will prescribe Bexaroten (Targetin) off label? No I don't.

Additionally, I don't know how to buy Bexarotene off label. Nor, am I personally interested in buying the medication.

Here is what Dr. Gary Landreth, Professor of Neurosciences, Alzheimer Research Laboratory Case Western Reserve University, School of Medicine, said,

"Don't try this at home because we don't know what dose to give, we don't know how frequently to give it, and there are a few nuances to its administration. So one shouldn't be prescribing it off-label."

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If you want to learn more about Bexarotene here is the link to 4 articles I wrote, Bexarotene and Alzheimer's.

I have no idea when and if there will be a Phase 2 clinical trial for Bexarotene and Alzheimer's. However, rest assured, the minute a clinical trial is announced I will publish that information here.


Coconut Oil

I have no opinion on coconut oil and its use with Alzheimer's patients. Yes, I am reading the available information and watching the videos.

Dotty does not take coconut oil.

If you are interested in taking coconut oil I would suggest you ask your doctor if there are any downsides to taking it. Not his opinion on coconut oil, if it conflicts with any medication you are currently taking.

The current frenzy over coconut oil does remind me of the past frenzy over Ginkgo Biloba. That one was shot down -- Ginkgo Biloba -- Two Thumbs Down for Treatment of Alzheimer's and Dementia.

I really can't see any downside to taking coconut oil. If there are no medicinal conflicts, coconut oil should be good for you.

I should mention, I am a fan of cinnamon.

To those who want me to promote their videos or websites that are selling coconut oil -- No.

Enbrel

Enbrel is back as a magic treatment for Alzheimer's patients. It comes and it goes.

I have no opinion on Enbrel. Dotty has not been treated with Enbrel, and as of this time, she never will be.

I am not interested in promoting the treatment for a fee, accepting advertising for a fee, or promoting videos on Enbrel as a magic cure for Alzheimer's.

I can't help or advise anyone considering this treatment.

Related Content.

• How Alzheimer's Spreads Throughout the Brain
• Test Your Memory for Alzheimer's (5 Best Self Assessment Tests)
• What is Alzheimer's Disease?
• What is Dementia?
• What’s the Difference Between Alzheimer’s Disease and Dementia
• Communicating in  Alzheimer's World
• How the Loss of Memory Works in Alzheimer’s Disease, and How Understanding This Could Help You
• Alzheimer's World -- Trying to Reconnect with Someone Suffering from Alzheimer's Disease
• Does the Combination of Aricept and Namenda Help Slow the Rate of Decline in Alzheimer's Patients

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Scientists Pinpoint How Vitamin D May Help Clear Amyloid Plaques Found in Alzheimer's

This new study helped clarify the key mechanisms involved, which will help us better understand the usefulness of vitamin D3 and curcumin as possible therapies for Alzheimer's disease.

+Alzheimer's Reading Room

For those of you that have been here a while you know I often write about the importance of bright light as it relates to my Alzheimer's caregiving effort with Dotty. I am convinced that daily trips into bright light improve Dotty's mood and behavior.

Sunlight is one of the best sources of vitamin D3. In fact, I often say to Dotty, time for your vitamin D injection before we go out into the sun.

What happens to a plant when it doesn't get enough sunlight? It withers and dies.

There is a blood test available that measures vitamin D3 levels in your body. It might be a good idea to get tested for a vitamin D deficiency.

The above explains in part why the research described below caught my attention.

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Scientists pinpoint how vitamin D may help clear amyloid plaques found in Alzheimer's

Dr. Milan Fiala

A team of academic researchers has identified the intracellular mechanisms regulated by vitamin D3 that may help the body clear the brain of amyloid beta, the main component of plaques associated with Alzheimer's disease.

Published in the March 6 issue of the Journal of Alzheimer's Disease, the early findings show that vitamin D3 may activate key genes and cellular signaling networks to help stimulate the immune system to clear the amyloid-beta protein.

Previous laboratory work by the team demonstrated that specific types of immune cells in Alzheimer's patients may respond to therapy with vitamin D3 and curcumin, a chemical found in turmeric spice, by stimulating the innate immune system to clear amyloid beta. But the researchers didn't know how it worked.

"This new study helped clarify the key mechanisms involved, which will help us better understand the usefulness of vitamin D3 and curcumin as possible therapies for Alzheimer's disease," said study author Dr. Milan Fiala, a researcher at the David Geffen School of Medicine at UCLA and the Veterans Affairs Greater Los Angeles Healthcare System.

For the study, scientists drew blood samples from Alzheimer's patients and healthy controls and then isolated critical immune cells from the blood called macrophages, which are responsible for gobbling up amyloid beta and other waste products in the brain and body.

The team incubated the immune cells overnight with amyloid beta. An active form of vitamin D3 called 1a,25–dihydroxyvitamin D3, which is made in the body by enzymatic conversion in the liver and kidneys, was added to some of the cells to gauge the effect it had on amyloid beta absorption.

Previous work by the team, based on the function of Alzheimer's patients' macrophages, showed that there are at least two types of patients and macrophages: Type I macrophages are improved by addition of 1a,25–dihydroxyvitamin D3 and curcuminoids (a synthetic form of curcumin), while Type II macrophages are improved only by adding 1a,25–dihydroxyvitamin D3.

Researchers found that in both Type I and Type II macrophages, the added 1a,25–dihydroxyvitamin D3 played a key role in opening a specific chloride channel called "chloride channel 3 (CLC3)," which is important in supporting the uptake of amyloid beta through the process known as phagocytosis. Curcuminoids activated this chloride channel only in Type I macrophages.

The scientists also found that 1a,25–dihydroxyvitamin D3 strongly helped trigger the genetic transcription of the chloride channel and the receptor for 1a,25–dihydroxyvitamin D3 in Type II macrophages. Transcription is the first step leading to gene expression.

The mechanisms behind the effects of 1a,25–dihydroxyvitamin D3 on phagocytosis were complex and dependent on calcium and signaling by the "MAPK" pathway, which helps communicate a signal from the vitamin D3 receptor located on the surface of a cell to the DNA in the cell's nucleus.

The pivotal effect of 1a,25–dihydroxyvitamin D3 was shown in a collaboration between Dr. Patrick R. Griffin from the Scripps Research Institute and Dr. Mathew T. Mizwicki from UC Riverside. They utilized a technique based on mass spectrometry, which showed that 1a,25–dihydroxyvitamin D3 stabilized many more critical sites on the vitamin D receptor than did the curcuminoids.

"Our findings demonstrate that active forms of vitamin D3 may be an important regulator of immune activities of macrophages in helping to clear amyloid plaques by directly regulating the expression of genes, as well as the structural physical workings of the cells," said study author Mizwicki, who was an assistant research biochemist in the department of biochemistry at UC Riverside when the study was conducted.

According to the team, one of the next stages of research would be a clinical trial with vitamin D3 to assess the impact on Alzheimer's disease patients. Previous studies by other teams have shown that a low serum level of 25–hydroxyvitamin D3 may be associated with cognitive decline. It is too early to recommend a definitive dosage of vitamin D3 to help with Alzheimer's disease and brain health, the researchers said.

The study was funded in part by the Alzheimer's Association and by the National Institutes of Health.

Other study authors included Danusa Menegaz and Antonio Barrientos-Duran of the department of biochemistry at UC Riverside; Jun Zhang and Patrick R. Griffin of the department of molecular therapeutics at the Scripps Research Institute in Jupiter, Fla.; Stephen Tse of the department of medicine at the David Geffen School of Medicine at UCLA and the Veterans Affairs Greater Los Angeles Healthcare System; and John R. Cashman of the Human BioMolecular Research Institute in San Diego, Calif.

Source Rachel Champeau, UCLA Newsroom

Related Content.

• Test Your Memory for Alzheimer's (5 Best Self Assessment Tests)
• What’s the Difference Between Alzheimer’s Disease and Dementia
• What is Alzheimer's Disease?
• What is Dementia?
• Communicating in  Alzheimer's World
• How the Loss of Memory Works in Alzheimer’s Disease, and How Understanding This Could Help You
• Learning How to Communicate with Someone Suffering From Alzheimer's Disease
• Alzheimer's World -- Trying to Reconnect with Someone Suffering from Alzheimer's Disease
• Does the Combination of Aricept and Namenda Help Slow the Rate of Decline in Alzheimer's Patients

You are reading original content from the Alzheimer's Reading Room. For more information on Alzheimer's and dementia go here. If you would like a free email subscription click here.