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/

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

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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.

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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,

10616237_10152505699331961_4740052752099689312_n

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

Image may contain: 1 person, smiling, bicycle and outdoor
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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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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03.20.18 Communicating in Alzheimer’s World, by Bob DeMarco, AlzheimersReadingRoom.com and other things

Tuesday, March 20, 2018 – I’ve written about how while Mama lived with us, the last few months we’d live in her bizarre little world.  She was not the mama I grew up with, nor the mama I’d known during my adult life.  Some times “my mama” would come out, but most of the time her world and ours varied widely from each other.  She’d talk about people long dead that were coming to visit or she wanted me to check on. We’d answer just like saying something that made sense and went along with what she thought was reality.  She thought we were the “couple who lives upstairs” and cooked for her (often it was food not fit for a dog, she’d say!!)  This article from Bob DeMarco, founder of AlzheimersReadingRoom.com explains that same concept, he just calls it Alzheimer’s World.  I’d call it Dementia World or the bizarre little world of the patient.
I am pleased to say I don’t have a bizzare little world I live in yet!!!
We celebrated Kallie (our teenage granddaughter’s) birthday Sunday.  She’s 17 now!!!
 
Roy has suddenly become quite busy with computer work and flooring work.  What we thought was going to be a quiet non eventful week, this week, has blown up with fun and other frivolities!  Roy is doing this work for a specific reason which we’ll share soon!
Madisyn’s school class had a field trip to Liuzza Land yesterday (Monday).  I went with Chip and her class and LOVED IT!!!  More on that in our next blog post.

Communicating in Alzheimer’s World , by Bob DeMarco, AlzheimersReadingRoom.com, July 31, 2017

You want to decrease both your stress as caregiver, and the stress of the person living with Alzheimer’s disease.

You want to reduce stress. You want to change the dynamic.

You want to change for the better — you want and need to change the way things are.

After repeatedly correcting my mother, telling her she just ate, and watching her get frustrated or angry, I finally realized something had to change and that something was me.

You might be wondering why I just repeated myself. Why? Because I believe it is necessary to get focused on what you want to accomplish, if you ever expect to accomplish.

It must become a deep and strong desire within you.

A goal.

For example, my mother, Dotty, continually tells me she is hungry. She does this repeatedly, just minutes after she has finished eating lunch or dinner. When a person says something that doesn’t make sense the natural tendency is to correct them. In this case, I would remind my mother over and over that she wasn’t hungry because she just ate.

Ever done that or something similar with a person who is deeply forgetful – raise your hand?

We do this because we have a problem accepting that a person living with Alzheimer’s does not remember. In the case of my mother, she does not remember that she just ate. She can’t remember she just ate, so she says she is hungry.

After the thousandth or so time of correcting my mother, telling her firmly she just ate, and watching her get frustrated or angry, I finally realized something had to change — this something was me.

I had to change.

I want to interject here that my mother even after years continued to tell me she was hungry right after eating. She frequently told me after breakfast and lunch that she hadn’t had a thing to eat all day. She told people on the telephone at night — I haven’t had a thing to eat all day. She — honestly — believed that what she is saying is true.

Why is it so hard to understand that a person living with Alzheimer’s forgets? A person living with dementia is deeply forgetful.

Why is it so hard to understand and accept they can no longer store the memory of what was just said, or what was just asked? They cannot store the answer to the question you just answered in memory, so they just keep on asking the same question over and over.

Like you and me, the deeply forgetful ask questions. The questions come from a different part of the brain then the part that is sick.

My guess is that you experience the frustration of hearing your loved one repeating words that you believe to be untrue over and over. You see and experience the same crazy behaviors over and over.

What you believe to be true, and what the person living with Alzheimer’s believes to be true are often diametrically opposed. The exact opposite.

Here is the one thing you need to understand.

Your view of reality and your loved one’s view of reality might be very different. This occurs because their brain is sick and they can’t remember simple things that are easy for you to remember.

Ask yourself, what are you doing and how are you reacting when someone living with Alzheimer’s says something you know to be incorrect or untrue?

What are you feeling when this happens? Are you constantly correcting them?

If you are constantly correcting a person living with dementia are you also experiencing enormous feelings of frustration and stress?

When you correct them do you you start to feel angry, stressed, and/or disconcerted?

Sooner or later you must make a decision.

Do I want to continue doing this? Do I want to continue feeling terrible? Or, is there an alternative?

This isn’t easy to do, but it is necessary — you need to start accepting that when a person who is deeply forgetful says something they believe to be true it is in fact a reality for them. It is their reality.

When they continually repeat themselves they do it because they can’t remember. There is no sinister plot here. Brain sick, Brain not functioning properly.

Don’t be afraid or reluctant to step into this new and very different world.

In Alzheimer’s World, reality takes on a different shape.

Reality in Alzheimer’s World is a reflection of what the person living with Alzheimer’s thinks and believes. It is this reality that you must focus on, not the way YOU think things are, or should be.

Acceptance.

I feel confident when I say this — you won’t be able to convince a person who is deeply forgetful that they are wrong, and you won’t be able to convince them that your reality is the true reality. They can’t remember like you or me, so they really cannot comprehend your point of view.

When you do this you are asking the person who is deeply forgetful to come back into your world. They cannot do this.

Think about what I am saying here.

I am asking you to develop a frame of reference, a new and different behavior that is one hundred percent diametrically opposed to the way you think and act — the way you think and acted for your entire life.

This isn’t easy. It could be one of the hardest things you ever try to accomplish.

Even though I was well aware of what I needed to accomplish, trying as hard as I could, it still took years to get there — to get into and comfortable with Alzheimer’s World.

Once I made it into Alzheimer’s World I reaped rewards that are hard to describe.

When you make it to Alzheimer’s World you begin the process of redefining reality. Instead of trying to brow beat your loved one back into your reality, you start to interact with them based on their view of reality.

For example. When my mother said, I am hungry, I’m starving — I said OK, we will eat in a little while. Instead of telling her — you just ate, you can’t be hungry.

If my mother asks how long before we eat, I don’t say in two hours — I say, soon. The soon in this sentence means when it is time to eat. When it is time to eat. I resist the temptation to say, we just ate.

Instead of an argument, my mother now reacts positively to this response.

Over time, my mother started saying something she never said before, instead of saying I’m hungry, I am starving, she sometimes says — Bobby, what did I eat today?

When I answer by recounting our meals, she still makes a funny face, the face of disbelief, but she doesn’t get angry or upset, and neither do I.

When I answer my mother I am in Alzheimer’s World. I’m calm, and my voice is calm, I am not showing her that I am exasperated by these questions. Why? Because I am not. This is how you learn to communicate in Alzheimer’s World.

When I recount to her what she has eaten I have to be very careful. Careful to tell her with a smile on my face, and in a low calm voice. Not like a lecture. If she gets that bewildered look on her face — confusion — that is OK because I can then change the topic.

On the other hand, if I allow my mother to get angry and disconcerted then she will start going into the black hole of Alzheimer’s World.

When my mother goes into the black hole, I can feel the Alzheimer’s trying to drag me into the black hole. If this happens, I am the one that ends up with a sore heart or stomach ache.

By listening to her lament — I am hungry, I’m starving — and by responding to her reality rather than correcting her — the communication between my mother and me has improved. The amount of anger, stress and angst is greatly reduced. On both sides.

This new form of communication leads to the reduction of stress, anger, and angst. It seems to have a cumulative effect. Less stress build up across a series of situations, leads to less anger and nutty behavior from my mother.

Less conflict, fewer explosions. More happiness.

Better care giving result.

 The goal in all communications with a person living with Alzheimer’s disease should be to connect with the patient in a positive, constructive, effective way.
So instead of telling my mother — you just ate. I accept her reality that she is hungry and respond in a positive proactive way.

03.18.18 Acceptance, by Cheryl Stevenson

ACCEPTANCE, By Cheryl Stevenson Sept. 2011

When I don’t recognize you, yet you know me, please be patient & understanding.

I can’t control what I remember or what I forget.

When I have trouble finding a word while I’m talking to you, please don’t make me feel bad about it.

I’m trying so hard to remember the word & the stress & embarrassment can increase my symptoms.

When I get lost, please help me find my way.

I don’t ever want to get lost, but sometimes it just happens.

If I try to explain to you some of the symptoms that I deal with, please don’t say that you know what it’s like, when you really don’t.

When I just want someone to talk to, please be there for support.

If I forget something that you’ve told me, just gently remind me.

Please don’t make me feel bad about something that I have no control over.

When I have trouble doing something on my own, please just help guide me through it.

Please don’t do something for me that I am still able to do with some help or guidance.

Please love me in spite of my faults, because no one is perfect.

If I’m in a fog, please be there to help make me feel safe.

Please learn to live in my world, rather than expect me to live in yours.

If your expectations of me are too high, I may fail.

Please try to accept me for who I am, & not for who I used to be.

©Cheryl Stevenson

 

03.01.18 Some Things I Learned About Dementia – Making end of life decisions, Part 2 originally published 03.05.15

Thursday, March 1, 2018 – Wow it’s already March!

The original blog below was the second part of our blog focusing on making end of life decisions.  The first was originally posted February 17, 2015 and reblogged 01.14.18 at https://rosalynandroy.com/2018/01/14/26422.

I believe it is helpful to read both blog posts as they address different aspects of  your loved ones end of life.

In my own life I’ve taken a few more steps towards making this smooth for my family when that time comes.

I’ve already written my obituary, as much as can be written ahead of time.  I’ve written my wishes concerning my funeral service and wake, when, where, who sings, what music is played, who reads, who I want to be pallbearers and some extras in case some are not available.  I know I will be buried in Trinity Baptist Church’s cemetery so there was no decision needed for that.  I have a document written concerning what clothing I wish to be buried in, the pall bearers information, who needs to be contacted when I’ve died and lots of other miscellaneous information.  Our son Chip knows about this and where it is located.  I’ve read the document with him and discussed it.

Well guess what I just found out. GGGGGrrrrrrrrrr….. I went to see some of the information in those important documents in case there was some I could share.  BUT, somehow I’ve deleted the folder on my computer with the Power Point of photos I created of my life, the instruction document, and other important information I put together.  Roy and I both have searched my computer and our server and found nothing.  This is so disheartening.  I’ll get started on recreating everything all over again while I still can.

The legal documents, Living Will, etc. are all still there!  Whew!!

happy fridayOriginal post 03.05.15 – Some of the end of life decisions that should be addressed are:

Advanced directives – Living Wills, General Power of Attorney, and Durable Power of Attorney for Health Care

Feeding tubes? DNR – Do Not Resuscitate? Hospice Care?

All of these and more are discussed in a document on a wonderful website:

http://www.alz.org/national/documents/brochure_endoflifedecisions.pdf

Another link to their website about Alzheimer’s specific hospice care.

http://www.alz.org/care/alzheimers-dementia-hospice.asp

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Our experience with end of life decisions:

When mama’s overall condition started deteriorating about two years before her death we had a Living Will, an Act10993455_821131654621733_4917288774200550534_n of Procuration (general power of attorney) and a Medical Power of Attorney drawn up, signed and notarized.  This doesn’t have to be something you have an attorney draw up (it’s very inexpensive this way) at least not Louisiana.  Look into your state’s laws regarding these documents to see the correct forms for your state and the least expensive, yet binding, option for you.  I do not know if in other states the DNR and the Living Will have the same wording but in Louisiana it does.  I believe that Living Will is the most common term used now.  Perhaps it’s the nice sound of it as opposed to a Do Not Resuscitate!

Everyone, regardless of age or mental condition, should take care of these things for yourself now so that your family does not have to deal with it later in your life at a time when emotions may cloud the decision.  These are the types of forms that you can and should advise your loved one who has Alzheimer’s to take care of long before their thinking makes them unable to legally make those decisions.

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Hospice Care – Our experience

If you paid no attention to anything else I’ve shared with you this has to be at the top of the list of things you DO pay attention to.

It is one of the most important things you can do for your loved one who deserves their last months and weeks to be the best we can give them.

Hospice care is offered when a patient is terminal and has 6 months or less to live.  If they live more than 6 months they just re-certify the need and you continue receiving help.  Don’t think that asking about hospice is a sign of giving up.  It is not, it is a sign that you care so much for your sick loved one that you want THE VERY BEST care you can give them.

10396286_830004430448484_7403771438852782976_nWe only had hospice care for one week before mama died.  How I wish we had known more and had this amazing assistance much longer. We did not know any better and I surely hope you’ll listen so you’ll know better.

Calling her doctor, before hospice care came in, resulted in anxiety and so much stress.  A regular doctor’s aim in treatment is to make someone better.  They are just not going to get better with Alzheimer’s and neither the patient nor their caregiver should be subjected to the extreme emotional trauma of having to deal with a regular doctor.  When you call with a problem either they don’t call you back for a day or so or they want to see the patient.  When that happened I wanted to scream “She can’t go anywhere, stop asking to see her, just do something.”   They wanted to solve her problems with medicine and kept her on diabetes, high blood pressure and cholesterol medicine even though she was skin and bones and probably didn’t have any of those problems any longer.   I cried and cried, feeling so helpless to do anything for this woman who gave me life and loved me through my whole life.

The first day we were with hospice and were exposed to a medical staff that understood the dying process and immediately responded I cried again, this time tears of happiness and joy.  They immediately knew what we needed and their whole purpose was to provide comfort, reduce pain and help us understand what Mama was going through.  They provided us with an emergency kit of  medicine that could be used without having to call the doctor, wait for them to call in medicine and go pick it up.

We are Southern Baptist and mama had been Southern Baptist for 87 years.  Our hospice spiritual person was a 10685542_851843131542168_6166661955711688889_nCatholic Nun.  I can’t for the life of me remember her name but I remember how amazingly comforting and PERFECT for us she was.  She respected our religious beliefs and did not in anyway do anything Catholic which would have thrown mama for a loop.  She listened to me and I can’t tell you what a relief it was to have someone who had been there, done that with so many others in my situation.  North Oaks Hospice was our hospice provider and every one of the medical personal who helped us were absolute angels sent from God.

She and others in the medical team came to mama’s funeral and we received periodic visits from the nun throughout the first year after mama’s death.  They also have grief support group meetings we could have attended. I was able to receive so much support and understanding from our church members who also recently lost their mama’s and my God that I felt I didn’t need to go to the support group.  You may need to so DON’T hesitate to take them up on that service.

We signed a Do Not Resuscitate Order (since we had her medical power of attorney) and were provided signs saying that and also DO NOT CALL 911 to post in locations where any visitor or caregiver would see in case she started to die and someone might be tempted to call 911.

They provided a hospital bed, Depends, mouth swabs (to keep her mouth mouth) and other items to keep her comfortable and out of pain.  Our experience with them and morphine was that without it mama’s last days would have been excruciating for her.  Having it and having the direction from the hospice nurses for how to administer it made mama’s last days much much more comfortable.

Through all the information we originally provided to hospice and the decisions we made when signing up we didn’t have to do anything other than call our nurse when mama died.  They called the coroner and the funeral home, they came and bathed mama’s body and dressed her before the funeral home came.  Because she was in hospice with documentation of her illness by their medical doctor there were no questions about her death to answer which would have been horrible as we were starting to grieve our loss.

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MAKING FUNERAL ARRANGEMENTS

We wanted to have mama’s funeral arrangements made prior to her death.  We almost didn’t make it.  Not having10299138_10152688213756198_8107683129242871037_n hospice early enough to help us know that when she started going down hill the end would happen so quickly we didn’t go until December 18th, the morning of the day she died in the evening.  My sister and I were able to make the arrangements with a clear mind not deep in grief.  It wasn’t easy but I’d highly recommend doing it before.

I asked my mama early on before we realized she had Alzheimer’s to let me know what she’d like her funeral service to be like (names of songs, who would speak, what Scripture would be read, who she’d like as pall bearers) so we’d be prepared for whenever the time came.  She handled it so well and with such sweetness that I was very relieved.  I think doing this while their thinking is still fairly clear will provide such comfort when the time comes that you are indeed carrying out their wishes.  Getting your loved ones wishes down on paper will provide them and you comfort.

To show I’ve put my recommendation into action in my own life I’d like to share this:

I went with my son to the local funeral home a few months ago and made all my arrangements (and my husband’s).  This is ideal since I got to choose what I want and my son is relieved of making decisions wondering “What would mama want?”

I’ve already written up what I want in my funeral service including who I want for pall bearers.  My wishes are clearly expressed and it feels really good to have this taken care of.  Why don’t you go ahead and take care of that now for your loved ones to have?

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My overall thinking on this end of life subject is: Whatever we can do early enough for our loved one to know it’s taken care of, will give them significant comfort when their mind is everywhere and they can’t express their concerns to us. Hang in there, draw on your faith in God and do every loving thing you can for them.

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Please come back next time when I’ll share some topics about dementia.  If you want to get an email whenever I post a blog (I write about other things, not just Dementia) 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,

1-john-3-18

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