08.27.18 DEMENTIA IS NOT A MEMORY PROBLEM

Monday, August 27, 2018 – What is happening when someone has dementia? It’s important to understand the job of the brain because it is the guiding system, the maintenance system, and the managing system of the body. Learn more about the role of the limbic system, the prefrontal cortex, the sensory motor strip, and the importance of the occipital lobe for seeing and doing. It is estimated that with most dementias the brain shrinks one third of its original size causing many changes in structural and chemical ability.

Dementia is not a memory problem.

It means brain failure and causes

many changes in structural

and chemical function.

That sentence above is one of the most important statements that I’d like everyone to know.  That’s why it is in large print, centered and bolded!

This video below is an overall great explanation of the parts of the brain and how they change, shrink or stop working with dementia.  I can never say enough about how Teepa Snow explains so clearly all aspects of dementia.

http://teepasnow.com/resources/teepa-tips-videos/brain-changes/

08.25.18 Rewiring My Brain and Stepping into Alzheimer’s World, by Bob DeMarco

Image result for be kind

Once you start to understand how things work in Alzheimer’s World – you get calm and comfortable.

Once you get calm and comfortable you give off a better “vibe” to someone that has Alzheimer’s.

Over time as you learn how to understand, cope and communicate with a person living with dementia you will find that instead of being at odds most of time you begin to relate better to each other. Once you start to relate to each other you find that it is much easier to operate in a world filled with Alzheimer’s disease.

The key word here is relate.

You relate well and get along best with your closest friends don’t you? Well in order to relate well with a person living with dementia – you have to adjust to the circumstances. I decided I would find a new way to communicate with my mother who was living with Alzheimer’s disease. I wrote that on my da Vinci pad in 2004. This was at the same time I was coming to another conclusion, something had to change and that something was me.

I did not perceived the changes in communication as being difficult. After all, I had been studying communication and decision making all the way back to college days, and ever since. I figured some practice and I would get the hang of it.

What I did not immediately perceive was how difficult it would be to change all the things I had learned over the course of my life.

For example, I had to learn how NOT to feel bad when my mother said something mean spirited to me.

I knew consciously that every time my mother said something “mean” to me, she didn’t mean it. I knew this because she never said any of those things to me before dementia started affecting her brain. Her ability to think and feel.

So, I knew it was Alzheimer’s that was causing her to be so “mean”.

Nevertheless, when Dotty said something mean, and even though I knew she didn’t mean it, I still felt sad, angry, and often snapped back at her. In other words, I reacted the way I would react to anyone that treated me in that way.

All I can say is, Wowie Zowie. It is very hard and very difficult to change patterns of behavior that you learned over 50 years.

I had to rewire my brain.

I decided it would be easier if I could put myself in a new place. This is why I invented Alzheimer’s World. Instead of trying to relearn my entire life, I decide I would start a brand new life, a second parallel life.

My new second life would reside within the confines of Alzheimer’s World. In Alzheimer’s World all the rules, feelings, and methods of communication would be different.

I started developing some ideas about how I would communicate effectively with someone that couldn’t remember they were mean to me, and really couldn’t remember my “too long” explanations of this and that.

In order to get control of my emotions I knew I had to move fast and seamlessly into Alzheimer’s World. I had to get there before the anger came up. Anger, even though I knew I shouldn’t be angry.

I came up with an idea that worked. As soon as the craziness started, I would take one giant step to the left. An actual physical step to the left. As I made this step, I would tell myself that I was going into Alzheimer’s World.

It took a while, but it worked. My brain was rewired. More or less segmented into two parts, real world and Alzheimer’s World. Over time I learned to separate one from the other.

Once I learned how to step seamlessly into Alzheimer’s World something wonderful started to happen. Dotty finally, after a few years, stopped saying all those mean and nasty things to me.

She started telling people, Bobby is a good boy.

Here is the best part. The better I became at communicating in Alzheimer’s World, the sweeter and more cooperative Dotty became. Not that the world is perfect. Dotty is still Dotty and she can still be a big pain in the butt.

You see, once I accepted that I needed to communicate and interact with Dotty in her new world she became happier and easier to deal with.

Now, we didn’t leave the real world. Alzheimer’s World is a combination of the two worlds. In Alzheimer’s World it is understood that the person can’t remember the now. They can’t remember the sentence before this one.

In Alzheimer’s World it is perfectly fine if someone asks the same question 20 times in a row.

This is how communication goes in Alzheimer’s World. In Alzheimer’s World it is perfectly fine if a person says NO 20 times a day. NO does not have the same meaning in Alzheimer’s World. In fact, in my opinion NO has no meaning in Alzheimer’s World.

Once you start to understand how things work in Alzheimer’s World you get calm and comfortable. Once you get calm and comfortable you give off a better “vibe” to someone that has Alzheimer’s. If you can get to the “vibe”, the person living with Alzheimer’s becomes calmer and feels more secure.

Let’s put it this way. If you were sent to live somewhere where all the people were purple and they spoke so fast you couldn’t understand a word they were saying — how would you feel?

If you felt like all the purple people didn’t like you — how would you feel all day long?

If you were stuck in this purple world and couldn’t figure out how to get out, and couldn’t understand how you got there in the first place — how would you feel?

Alzheimer’s World can be a wonderful place. In fact, most Alzheimer’s patients are very sweet once you get to know them. They are very appreciative.

Keeping stepping to the left. You’ll find the door to Alzheimer’s World.

This article is a repeat of an article that was published previously. It ranks in the top 25 most frequently read articles on the ARR, and has been widely shared via on Google+ and Facebook.

https://www.alzheimersreadingroom.com/2011/06/rewiring-my-brain-and-stepping-into.html

By Bob DeMarco, Alzheimer’s Reading Room

Ya’ll come back now, ya’ hear!

08.08.18 How stress affects the brain

Wednesday, August 8, 2018 – We tend to think of stress as an immediate problem: The boss hovering over our desks; the mad dash to the subway at the end of a long day. And in the short-term, stress makes us feel irritable, anxious, tense, distracted and forgetful. But that’s only part of the story.

Over time, elevated levels of cortisol, the stress hormone, can chip away at our physical, mental and emotional health. The link between chronic stress and the potential for mental health conditions — such as post-traumatic stress disorder, anxiety, depression and other mood disorders — is well-established. But what kind of changes — both fleeting and lasting — are actually taking place in the brain when we experience a stressful event?

Here are four ways stress changes your brain.

Stress could trigger a chemical change that makes you irritable

Many of us know that we’re not pleasant to be around when we’re stressed out — we may get irritable and grumpy. Under pressure, many people get distracted and forgetful and this could be a sign of the destructive effects of stress in the brain.

French researchers discovered an enzyme, when triggered by stress, that attacks a molecule in the hippocampus which is responsible for regulating synapses. When the synapses are modified, fewer neural connections are able to be made in the area.

“These effects lead subjects to lose their sociability, avoid interactions with their peers and have impaired memory or understanding,” a university press release explained.

Chronic stress can shrink your brain

Stressful life events could harm your brain’s memory and learning capacity by reducing the volume of gray matter in brain regions associated with emotions, self-control and physiological functions.

Chronic stress and/or depression can contribute to lost volume in the brain’s medial prefrontal cortex, which is associated with emotional and cognitive impairment. Researchers found that this is particularly true of people with a genetic marker that can disrupt the formation of synaptic connections between brain cells.

A 2008 study on mice found that even short-term stress could lead to communication problems among brain cells in regions associated with memory and learning.

One stressful event can kill brain cells

As we learn new information, we constantly generate new neurons in the hippocampus — a brain region associated with learning, memory and emotion. But ongoing stress can halt the production of new neurons in the hippocampus and may also affect the speed of connections between hippocampal cells, according to Scientific American. What’s more, an animal study found that a single stressful event can destroy newly created neurons in the hippocampus.

University of California at Berkeley researchers found that the brain in a state of chronic stress generates more myelin-producing cells and fewer neurons than a typical brain would, resulting in excess myelin (an insulating layer of protective coating around neurons) in the hippocampus.

“The hippocampus is especially vulnerable to ongoing emotional distress, because of the damaging effects of cortisol,” psychologist Daniel Goleman wrote in Social Intelligence.

Stress can disrupt memory by triggering the brain’s threat response

While cortisol hampers the activity of the hippocampus, it increases the size and activity of the amygdala, the brain’s main center for emotional responses and motivation. The amygdala is responsible for fear processing, threat perception and the fight-or-flight response. Increased activity means we’re in a state of reacting to perceived threat, which can have the effect of restricting our ability to take in new information. It can also heighten emotional reactions.

“After a day when a student gets panicked by a pop quiz, he’ll remember the details of that panic far more than any of the material in the quiz,” Goleman wrote.

Carolyn Gregoire The Huffington Post
I can personally say that what this article is about is so very true.  When I was first diagnosed in 2011 and seeing the doctor regularly in 2012 I was under considerable stress from many directions.  The main thing the doctor told me was to eliminate the stress.  Unfortunately eliminating the stress was out of my control.  This was around the time that Roy and I decided to live full time RVing.  That was the biggest stress reliever imaginable and helped my brain deteriorating to slow down.
Now when I’m under stress my brain truly shuts down.  The best way I can think of to describe it is that there are less things going around in my head.  The things that are there don’t have a connection to either the next step or another thought related to it. I was hopeful when I started writing this that I’d be able to share more.  It’s just not happening.  So I’ll say good bye now.
Ya’ll come back now, ya’ hear!

08.10.18 Alzheimer’s and Dementia from the patient’s perspective reblogged from January 2015

August 14, 2018 –  Since I originally wrote this in 2015 I’ve found two very interesting dementia patients who still communicate pretty well.  One, Rick Phelps, started a Facebook group called Memory People. Here is a link to that group: Memory People on Facebook   I’ve shared some of Rick’s writing before and plan to share soon one he just wrote about “anticipatory grief.”

The other dementia patient, Peter Berry, publishes on Facebook a weekly video on different dementia topics and an update on how he is doing. Here is a link to his facebook page: Peter Berry On Facebook

10460724_539323889537944_4082775068952904086_nThis week I want to share about Alzheimer’s from the patient’s standpoint.

“I’m Still Here” is a song about dementia, written from the patient’s point of view. It can be a helpless feeling after you get an Alzheimer’s diagnosis, and the support of your loved ones can help ease the stress that this disease causes. Click on the photo below to watch this short video!

i am still here graphic to go with song

1d-5

ALZHEIMER’S PATIENT’S PRAYER BY CAROLYN HAYNELI

Pray for me, I was once like you. Be kind and loving to me, that’s how I would have treated you. Remember I was once someone’s parent or spouse. I had a life and a dream for the future.

Speak to me, I can hear you even if I don’t understand what you are saying. Speak to me of things in my past of which I can still relate.

Be considerate of me, my days are such a struggle. Think of my feelings because I still have them and can feel pain. Treat me with respect because I would have treated you that way.

Think of how I was before I got Alzheimer’s. I was full of life, I had a life, laughed and loved you. Think of how I am now, my disease destroyed my thinking, my feelings, and my ability to respond, but I still love you even if I can’t tell you. Think about my future because I used to.

Remember I was full of hope for the future just like you are now. Think how it would be to have things locked in your mind and can’t let them out. I need you to understand and not blame me, but Alzheimer’s. I still need the compassion and the touching and most of all I still need you to love me.

Keep me in your prayers because I am between life and death. The love you give will be a blessing from God and both of us will live forever.

How you live and what you do today will always be remembered in the heart of the Alzheimer’s Patient.

1d-510 REQUESTS1d-5

The following links are to stories from Alzheimer’s patients. Please spend some time reading each one of these stories told in a way that only they can:
|108I just found this blog called Welcome to DementiaLand by Wayne who does have a last name but I couldn’t find it just now.  I don’t know whether it’s my brain issues or his that make navigating his site difficult.  His level of sharing is great though and I felt strongly it should be included here.  

http://dementialand.chewtor.co.uk/#category2

108

Interview with Alzheimer sufferer Richard Taylor: ‘You turn into a person you don’t know any more.’

http://www.spiegel.de/international/zeitgeist/interview-with-alzheimer-sufferer-you-turn-into-a-person-you-don-t-know-anymore-a-688049.html

108

An author and former physician, Dr. David Hilfiker was diagnosed in 2012 with a progressive mild cognitive impairment. His doctor thought it was Alzheimer’s but additional testing proved this initial diagnosis to be wrong. Now David must learn how to come to terms with the reality of worsening cognitive issues that appear to have no cause.

http://www.agingcare.com/Blogger/David-Hilfiker

108Harry Urban has lived with Alzheimer’s disease for seven years, “We have no typical days. You have your good days, your bad days and your Alzheimer’s days,”

http://www.agingcare.com/Articles/alzheimers-patients-share-their-experiences-153702.htm

1d-5guilt.

The video below  of a five year old singing “Peace in Christ” seemed appropriate to me to share with you today.  As a Christian with dementia, having peace in Christ is what gets me through every day. I hope you enjoy hearing this song!

Until next time,

psalm 26 73

cooltext1838781539

Click on the links below to go there!

Dora and the Explorers

Wacky Wonderful Wednesdays 

07.30.18 – When Language Fails in Dementia – AND – Dementia Medicines, by Teepa Snow

Monday, July 30 – Here is Teepa Snow with another amazing video that covers oh so much valuable dementia information.  She doesn’t just cover one aspect, there’s lots in this one.  I can already see some of the things I do in this and some that I hope are a long long way off.  The second video below is about three of the dementia medicines available today.  I’ve taken all three and am currently on Galantamine. Namenda is the fourth medicine but I think it is considered for midstage dementia and the three she talks about are for early stage dementia.  For me it’s been difficult to tell when I’m taking the medicine if it is doing a lot.  However when I’ve had to get off of any of them the decline in my thinking and being able to communicate is drastic.  I hope you will learn something from these two videos to educate you in taking better care of your loved one with this horrific disease.

Teepa Snow

When Language Fails in Dementia

Dementia in the middle-to-advanced stages diminishes communication & language. Watch Teepa Snow convey the power of music. See her demonstrate how to use rhythm and movement when language fails.

The left hemisphere of the brain processes language (left for language). The right processes signing, rhythm and curse words. How can dementia caregivers use these facts to help people having trouble with words and thinking? What is the best way to suggest a word? Or is it better to let someone struggle and figure things out on their own? Watch Teepa Snow offer tips on how to do your part with empathy, compassion, and concern.

What Do Aricept, Exelon & Razadyne Do?

See Teepa Snow talk about the top medications for Alzheimer’s & dementia. In plain English, she explores what they do and how they work. Get clarity on Aricept, Exelon and Razadyne (generic donepezil, rivastigmine and galantamine).

On the web page that I found the video on there is a table explaining the various medicines.  Here is a link to the page with that table.  It’s a little ways down the page past the video.  http://www.alzheimersweekly.com/2013/04/what-do-aricept-exelon-razadyne-do.html

Ya’ll come back now ya’ hear!

cooltext1838781539Click on the links below to go there!

Wacky Wonderful Wednesdays

Some Things I Learned About Dementia

07.12.18 Deficits in Executive Function in Alzheimer’s and Related Dementia

Thursday, July 12, 2018 – I haven’t written about my dementia lately nor have I shared information about dementia that I’ve found in my reading.  Mostly because I haven’t been able to absorb much lately and putting the information out there just wasn’t happening.
All dementias are different so what is commonly thought to be what memory loss looks like can be very different from individual to individual.  I have new learning deficiency, short term (recent) memory deficiency and others including Executive Function deficiency. If I can help others understand that there is no one way that people lose their memory that would be a big accomplishment.
This article below is about one of the aspects of frontotemporal dementia which is one of the aspects that affects me a lot, Executive Function. When I saw the article from Alzheimer’s Reading Room in my email I thought I really should share this.
From the article:
Executive function is an umbrella term for cognitive processes that regulate, control, and manage other cognitive processes. These processes include planning, working memory, attention, problem solving, verbal reasoning, inhibition, mental flexibility, task switching, and initiation and monitoring of actions.

Executive Function is something I’ve been dealing with a lot the last two years. My deficiency in this area became very apparent to us when we were on the road last year.  Making plans during our travel has always been my responsibility.  I have always been an organizer and planner and I loved doing that.

When my brain was working at its best I could see the overall goal (the big picture), determine all the steps that needed to be taken to achieve that goal and on down to all of the details.  I was very good at that so now that I can no longer do any part of that well on most days, I just don’t like it.

The planning for our travels became very difficult because of my growing loss of Executive Function.  Having to compare two or more RV parks in various locations and remember what I found from each was impossible for me.  The parks we’d stay at depending on several factors (price, how far we would travel in a day, how close they were to what we wanted to see and on and on) Remembering what step I just did or read or found out (or I should say NOT remembering what I just did) made moving forward with the next decision something I couldn’t do without being frustrated.

We realized after a few months that if I couldn’t do this any more we couldn’t travel.  Roy could not be responsible for the driving, setting us up and taking it down at a park, all of the planning, driving us in our truck to and from places and just a lot more things.  He helped me with the planning as much as he could.  I wrote down each thing I did to try to remember.  While that helped it made everything much harder, taking some of the joy out of our travels.

For me to write today’s blog post and organize it properly my Executive Function had to be doing pretty good.  It is at the moment and I grabbed today’s good time to put this together!

Deficits in Executive Function in Alzheimer’s and Related Dementia

Brain Executive FunctionBy Carole Larkin, Alzheimer’s Reading Room

Shall we ponder some of the issues regarding slowly losing executive functions in Alzheimer’s and related diseases today?

First, let’s define what executive function is.

An article by Leilani Doty, PhD, the Director of the University of Florida Cognitive and Memory Disorder Clinics tells us that executive functions generally take place in our frontal lobes, right behind our forehead.

These functions include our ability to plan things, to solve problems, to organize things in our heads, to develop the initiative to start something, to make an appropriate decision, to consider consequences of our choices, to form an idea, to prioritize things, to be able to control your own emotions and to be able to think abstractly.

Additionally executive functions include:

  1. the ability to use working memory (to hold the item in your head long enough to use it or apply it to something else),
  2. the ability to pay attention to something without getting distracted,
  3. the ability to focus in on important details, to work towards a goal (plan), to adjust to changes (shift gears midstream)
  4. and, to know when to stop an action or task that has been completed.

These things are what place us above other animals; in other words what make us human.

Dr. Doty breaks it down into 4 main steps:

  1. Start: Think about the problem and what needs to be done. Think of a way to solve the problem. Consider resources, past experience, new possibilities, values, deadlines, etc.
  2. Maintain: Start acting on the first step and continue until that step is done.
  3. Switch: Do each step and move on to the next step in order to complete the task or solve the problem.
  4. Stop: Evaluate the outcome. Is the end result good, is it adequate, is it finished, or is more action needed? When done, then stop.

And here are some finer brain actions within the main steps of executive function:

  1. Forming ideas to do an action.
  2. Starting an action.
  3. Maintaining an action until the step is finished (knowing when a step is done).
  4. Switching behaviors to do the next step needed.
  5. Regulating, controlling and adjusting body actions to deal with changes and new information along the way.
  6. Planning a tactic down the road to deal with a new issue or new direction.
  7. Holding details in working memory.
  8. Controlling emotions.
  9. Thinking abstractly.

Knowing when the whole task is finished, stopping that task, and moving onto a different task or activity.

Follow this link to see the full article: http://alzonline.phhp.ufl.edu/en/reading/ExecutiveFxLatest.pdf.

Note from Rosalyn: I ask that my family and close friends read the full article above.  Please do it for me.  It explains more than just what Executive Function does, it says how it affects someone with dementia and I think will explain a lot about how I am different now than I use to be.  Please read this. 

Back to the article: Phew! That’s a lot of things that executive function controls.

Dementia Caregiver Information (and anyone else who is around the patient a lot)

Now imagine the neurons in that part of the brain beginning to die. Think of it as if there is a light bulb representing that part of the brain and it begins flickering; sometimes on strongly, sometimes on weakly, sometimes not on at all. Well that’s how it is for years and years in Alzheimer’s and other related dementias.

How do you (the caregiver) know when the person’s executive function is OK, kinda not OK, or definitely not OK, because it’s always fluctuating? The answer is: you don’t know.

You couldn’t possibly know. Because, of course, you are not inside their heads watching the neurons fire, or not fire. So here you’ve come face to face with the true evil which is Alzheimer’s or another dementia.

You are the caregiver. The one with the whole brain (theoretically). At any given moment, you are responsible for their safety and their continued existence on this planet. Yet, they deserve to be self-reliant and independent as any other adult would be. They know it and you know it.

What to do? What to say? Stressed out much, are you at this moment?

So now, I think we are talking about talking risks here, folks. We do it with them all day, every day. We don’t want to, but we’re forced to. They force us to because many times they are not even aware that the light of logic and reason is weak or has gone out. Oh and by the way, self awareness is another executive function.

To think about taking a calculated risk by trying to control the environment or the circumstances in which this action (or non action) takes place, as much as possible. By tipping the scale on the side of safety as much as you can, you are taking a calculated risk as opposed to an uncalculated risk. It takes courage, I know, in the face of the anger and other nasty emotions that you will faced with, from the person with the disease.

But at least try.

Alzheimer's Reading RoomCarole Larkin MA, CMC, CAEd, DCP, QDCS, EICS is an expert in Alzheimer’s and related Dementias care.  She also is a Certified Geriatric Care Manager who specializes in helping families with Alzheimer’s and related dementias issues. Her company, ThirdAge Services LLC, is located in Dallas, TX, and her website is www.thirdageservices.com.

Original content the Alzheimer’s Reading Room

The Alzheimer’s Reading Room is the publisher of high quality expert content and news for the Alzheimer’s and dementia community.

Ya’ll come back now, ya’ hear!

06.21.18 Some Things I Learned About Dementia – Love them, be kind to them, be sweet even childlike sweet originally published 12.19.14

Thursday, June 21, 2018 – This was originally written in 2014.  I have to admit that while re-reading this particular blog post from 2014 it brought tears and heartache to me.  I have read so many stories and episodes that caregivers have shared of how difficult care giving is and it absolutely is.  It’s horrendously difficult to watch your loved one suffer and turn into someone unrecognizable.  A common comment from spouses of someone with dementia is that “It is so hard to grieve the loss of someone who is still living.”   I now see these difficulties from the other side and feel the importance of others understanding this horrible disease from our side as well.

10609479_773060536095512_770022682920397739_nOriginally published 12.19.14 – Nothing in today’s blog is from any source other than our experience with Mama. She lived in our home during the final stages of Alzheimer’s. While we were moving from one house to another (and doing renovations on the new house) she lived in a local Assisted Living Home. Most of the main points I make below can, and I hope will be, used in your care giving. I’ll share what we did that seemed to work and you take it from there to fit your situation.

This week’s blog started out being about two other topics. However, as I collected information to share and writing pieces to add into these blogs, one thing keeps tugging at me to be shared first.

So here it is: Love them, be kind to them, be sweet even childlike sweet. Always strive for patience and calmness. Pray often for these things. It may not be in your nature to love others, be kind to others or be sweet to others. If not, I beg that you try it during this time. fake it if you must, but be loving, kind and sweet to them.

BE LOVING

Are caregivers saints?? No, but sometimes it will feel like everyone expects you to be one and you may feel heavily weighed down with this responsibility. My solace was knowing that God is my Savior, my King, my everything and He would never leave me alone as I cared for Mama. My pastor was a great comfort during that time. My husband was my hero loving Mama like she was his own Mama and allowing our household to be completely turned upside down for a long time. Normal took on a new meaning and I can’t stress that enough. We learned to laugh a lot and be silly to break the stress that sometimes hung in the air. My sister was my primary relief and was wonderful about coming to stay with mama as often as I needed her to. She’s my only sister, so it fell on us to care for mama in her last years, as she10734192_10152473918576198_829463759479924163_n so willingly loved and cared for us during our childhood years and on into our adult years.

These Alzheimer’s patients (I’d like to call them victims) didn’t make the choice to lose themselves to this disease that eats away at their true being, a little piece at a time. They are very dependent on their caregivers for a lot during the middles stages and for everything during the final stage.

It is easy to say “They don’t know what’s what, so why even care?” Can I say strongly enough “Shut it”. Don’t even go there if you have a loved one in need of your care. Most likely they were one of your primary caregiver when you were a baby growing into a child, teenager and didn’t let go until you became an adult. They loved and cared for you then and now is your opportunity to return that love and care.

Making the decision to become the primary caregiver may not have been a choice you made. You may have gotten it by default or you were the only one available. Whatever the reason, you have in your hands the heart and well being of someone for the final years, months and days of their lives. It’s a lot like being a parent, only the roles are reversed now.

Near the latter stages of Alzheimer’s Mama didn’t always know either my sister or I was her daughter, whose house she was living in or even who she was. Then nearer the end she couldn’t speak, walk, or smile any longer. This decline occurred over maybe a month or two so I know we were very blessed at that short period of time.

She had the most beautiful smile, I just had to share that!

During this time I started calling mama “pretty girl”, touching her face lovingly with the back of my hand, and loved her like a child loves to be loved. No matter what was happening in the rest of the house or how many times she’d call me into her room for the same thing over and over I “tried” to always enter her room with a smile on my face. She responded with sweet smiles and if she had been agitated like they sometimes are, that would stop.

10606322_770140433054189_4461898516402014795_nWhen they leave the world of reality for their bizarre little world, creating peace and happiness in some form for them is key.

I had two little beanie babies that we gave Mama as her babies to pet and love, and she was so happy with them. Mama loved to be needed and be helpful to others. She took right to taking care of the babies in the same way she use to take care of us. We would talk to them and she’d tell me stories about them and the joy on her face during those times was so heartwarming.

When she’d tell me some absolute foolishness I’d go there with her to her weird little world, and we’d have a grand old conversation.

Most people benefit from the touch of another person. These wonderful people are no exception. Mama often applied hand lotion to her hands pre-Alzheimer’s and her hands were always soft. She responded so well to having that done while living with Alzheimers that we made a regular practice of doing that. Just that simple act calmed and soothed her spirit. Don’t just stop with the hands and arms (and while doing that do it slowly so they enjoy it longer) every now and then do their feet and legs. The stimulation this gives them is so therapeutic to giving them another moment of light in their otherwise darkening world.

In one of next week’s topics I’ll share more about how we tried to provide a peaceful loving environment for Mama based on her love for the Lord.

Your Alzheimer’s patient isn’t my mom, so your choices will be different, but they all deserve all our love and kindness. You will see that message in my different forms throughout the weeks this blog is written.

index Please come back next time when I’ll share two topics: Learning about your loved ones lives before it’s too late and how to use their passions from when life was good to bring some joy into their current lives If you want to get an email whenever I post a blog (I write about other things, not just Alzheimer’s) find the “FOLLOW” box which is usually to the right hand side somewhere, enter your email and respond when the confirmation email is sent to you.

If you are in need of prayer for yourself, in your role as a caregiver, or if you have any specific questions please send me a comment with whatever information you want to share or ask about. I’ll say again that I’m not expert but I probably experienced with my mom a lot of things you’re going through and will try my best to help. If I don’t know the answer I will tell you I don’t know. I’ll never judge, I’ve been judged enough to last a life time and would never do that to someone else. My email address is rosalyn@selu.edu if that is an easier way to communicate.

Until next time,

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Dora and the Explorers published randomly

Wacky Wonderful Wednesdays  published every Wednesday

 

04.09.18 THE IMPORTANCE OF TOUCH AND KINDNESS IN DEMENTIA, by Bob DeMarco

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PETER BERRY

Monday, April 9, 2018 – I have read Bob DeMarco’s writing on Alzheimer’s Reading Room and this one on touch and kindness was especially spot on.

Another person, Peter Berry who has dementia, puts out a weekly short video of things related to what he’s experiencing at that time, that he thinks will help others.   He is a very positive person, determined to live his life the best he can. Here is the link to his you tube channel. Peter Berry’s You Tube Channel. The latest video, his 40th weekly video, is the main one I want to direct your attention to.  At least to start off.  I’ve never thought of doing what he talks about in the 40th weekly video and I will be from now on!

Things have been a little rockier lately with my dementia than usual along with other challenges in our life.  I would appreciate prayers.  This isn’t going away but please pray that God gives me and Roy the strength and the wisdom to handle this the best way we can, the way He wants us to.  Through the rough times and the good times God is our Rock.  I am so thankful for that.

One of the biggest challenges Alzheimer’s Caregivers face is how to communicate effectively with someone living with Alzheimer’s disease. This challenge is particularly difficult when a person living with dementia becomes nasty and mean. The importance of touch and kindness should never be underestimated in Alzheimer’s and dementia care.

THE IMPORTANCE OF TOUCH AND KINDNESS IN DEMENTIA, By Bob DeMarco, Alzheimer’s Reading Room

At the beginning, my mother turned meaner than a junkyard dog.

She said mean and nasty things to me every day.

This was new. My mother had never engaged in these behaviors with me before.

I had a leg up on this one because I studied communication in college and graduate school.

I understood that when my mother said something mean or nasty that it was the Alzheimer’s at work. It was not hard to make this cognitive leap. She had never done it before, now she was. What changed? Her brain changed. It was sick.

Even though I understood what was happening, it still hurt when she said those things to me. She did make me feel angry and sad. Every day. Day in and Day out.

I knew I had to do something. I finally realized something had to change — the first thing that had to change was me. I was going to need to learn how to label my feelings so I could control what I was feeling. Instead of mad, ready to take action.

I also decided I was going to have to do something to change Dotty. I already knew that trying to reason with someone suffering from Alzheimer’s is like trying to jump over the empire state building in a single bound.

Here is a quick description of one of the things that I did start doing. And yes, over time Dotty stopped saying those mean and nasty things to me.

Everyday, early in the morning, I would bend down and say something nice and positive to my mother. While doing this,

I put my forehead on her forehead.

I tried to get her to smile and say “yes”. I call this the positive reinforcement part of the process. When I say something nice, and when she responds yes –it anchors her.

I started to do this first thing in the morning several years ago. But not before I discovered that it worked and stopped her from being mean and vicious. I do it now in the same way I do many things — before it is needed. I call this getting out in front. I also call it getting the day started on the right foot. I don’t sit around and wait for the crap to hit the fan.

This is what I started doing in an effort to make my mother feel more secure and to stop saying mean things to me. My hope was that if I could make my mother feel more secure, she would stop being a junkyard dog.

When my mother would say something mean and nasty to me like, “get out, I can take care of myself”.

I would smiled at her, put my head against her forehead, and say something positive like,

“I am here, and I am not going anywhere”. While my forehead was still attached to hers I added something like,

“We are both here to take care of each other, we need each other”.

I was hoping beyond hope that somehow my mother would come to believe we were a team.

It worked.

The instances of my mother’s meanness and nastiness have declined dramatically. Today, she is more like the sweet person I always knew.

I believe the combination of touch, positive reinforcement, the calmness in my voice, and the smile did the trick. It really wasn’t hard to do. I did need a lot of practice on the emotional side. I had to get control of my emotions. I had to learn to meet meanness with Kindness.

On the other hand, the words came easy because I meant and believed every word I said.

Over time I learned how to communicate in a new, different, effective way. This is pleasing to me, and makes me feel happy.

I relearned something I already learned a long time ago. You get more with sugar than you do with vinegar. I guess you could say, I became a better person along the way.

I could thank Alzheimer’s for this. I won’t.

Thank you, Dotty.

Don’t be afraid to try it. I’m confident it will change your life.

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Some Things I Learned About Dementia

03.25.18 What Not to Do in an RV (an RV Newbie Mistake), by Duet Justus

Sunday, March 25, 2018 – RVers can get themselves into pretty bad situations especially when you’re new at it.  This was so awful and had an unexpected ending that I just had to share it! We have never experienced this particular challenge but over the last 5 years we have had our own share of embarrassing moments!

Duet Justus (the RV owner and video maker) wrote about this video:

Today, we’re sharing the scariest moment of our lives. This is what NOT to do in an RV and is without a doubt the biggest RV newbie mistake we’ve ever made. Lesson learned? Don’t mess with mud!!!

Other You Tube videos from Duet Justus can be found at:  https://www.youtube.com/channel/UCIeTn13FYQI1YL4InzvuWuQ

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