01.11.20 Bits and pieces of dementia writings over the last two years

Since I laid it all out there in my last blog post about recent events in this dementia journey I want to share that I am coming out of the bad spell. It’s not at all back to “my normal” but it is better. Better for me may not be what you think of as better but for now I can’t describe it.

The “nice” thing about not remembering is that I don’t remember the things from last week. I had to look up the blog and read it to know what happened.  Weird.

Over time I’ve started writing blog posts about what’s happening in my life with dementia.  I write a bit and then don’t publish it. They are just pieces I’ve written and are not connected but all relate to dementia so I’m putting them here with dividers and hopefully something in one of them will help someone out there. Happy Saturday ya’ll!

2018 How I live my life is determined pretty much by how this dementia monster is behaving in my life! It’s been 7 years since I first had neuropsychological testing in November 2011 and was sent on to see Dr. Shamsniam a neurologist in Metairie, who did several medical brain tests. His medical conclusion supported the neuropsychological testing done by Dr. Susan Andrews.  They diagnosed Vascular dementia from having several TIAs (Transient Ischemic Attach – Mini Strokes) that damaged various parts of my brain. Frontotemporal dementia (FTD) from having a shrunken brain in the Frontal Lobe and Temporal Lobes. Other lobes are also shrunk but the majority of the shrinking is in the Frontal and Temporal lobes.

I honestly still have a lot of times that I think “This is all garbage. I am as okay as the next person.” I am able to think that way from time to time because of the life Roy and I live. I am very thankful that my dementia journey has gone slowly and that I am not what most people think of looking like when you have dementia.

I am thankful that God has given me this time as still being mostly Rosalyn. I know  God is in control of everything and my journey is in His hands.

When an older person is diagnosed with dementia they probably had it for years before then. Their pathway from diagnosis to death is typically short.

This has taken a while to write because I change from time to time.  Some days I am really mean, mostly to Roy. I was mean and rude recently to our new RV space renter and I had to apologize later when I realized what I had done.

2019 I just listened to a video by the writer of Still Alice. in it she points out that the more knowledge and experiences someone with dementia has the lesser degree dementia will affect you leaving your abilities in tact longer.  the information there helps explain why i am still able to function as well as I can.  she mentioned that cross word puzzles don’t help because youa re retrieving existing knowledge.  learning something new is what help.  our travels and also living in the RV definitely helped me learn more. this is exciting to me  because it explains a lot.

This is the video:

http://www.alzheimersweekly.com/2017/04/alzheimers-isnt-destiny.html

2019 I haven’t written a lot recently about my shrinking brain filled with holes.  In the past when I had a day or even a few hours of conversation, activity, socializing and simple interaction with others, the rate my brain had to run to keep up just wore me out.  A good night’s sleep or several hours of trying to not think helped me recover to a better place.

The last couple of weeks have involved repeated conversation, activity, socializing and lots of thinking. No longer has getting a good nights sleep helped and I certainly have not had several hours of not thinking.  It just didn’t stop. Things outside of our control, good things, bad things.  I am not complaining, it’s just life but I’ve been waking up with brain mush.

I hear it from others and read it as well. You need to keep your mind working, get out, see people, socialize, keep busy. Really??!!  That might be accurate at some time down the dementia road and it was true for me before recently.  Now any one of those things tires my brain out so much.  You can’t imagine how much I wish I could be the social person I use to be.  If someone asked me to do something I’d say yes and I’d be dependable about it.  Let me spend an afternoon visiting with just about anyone or any group of people and I thrived.

While I still can I continue to try to be an advocate for dementia awareness.  Today I want to share some of the things that go on sometime in my daily life, living with dementia.

Sometimes, now, I am in a situation where I don’t remember the name of someone I am talking to.  I’ve gotten quite good at this now and can hold a conversation without ever saying a name, but it has taken practice.   I can also hold a conversation that is more chit chat than substance which tends to mask what’s going on inside my brain.  I noticed that in mama when she would smile and give a seemingly normal response which was actually just a cover-up response when she didn’t really know what we meant.  When people ask how I am doing I always say fine, who really wants to know that can’t remember one thing that happened that morning or the day before????

I spend some time of the day on the computer on Facebook, writing my blog, googling information for caring for my garden. This is getting harder and harder each day.

When I get ready for bed. I take my night time medication, so many tablets to take in the course of a day… I crawl into bed and am at last in my “happy zone.”  Not that my day is not filled with happy moments, just that when I’m in my room alone there is nothing required of me, no one is talking to me wanting a response.  I read both some portion of a book and also my Bible.  I love that our church is reading the Bible together in our own time.  I find that when I read in that quiet time (that may last hours) I retain a bit more of it than when I read during the day when there is activity or just someone else around.

One day during 2018 This week on Thursday when I woke up I felt like my brain was in a fog.

I usually check my phone for emails, Fox News, Facebook before I get out of bed.  None of it was making sense to me.

When I got up and tried to write one of my blogs my brain didn’t know how to do certain parts of putting it together.  My writing didn’t make any sense.  I went from one blog to the other trying to get something started.  It didn’t work.  I started crying because even though these things have happened before they all haven’t happened before on the same day.

I tried to paint rocks and couldn’t come up with anything about how to do that.  I couldn’t remember how to make my oatmeal breakfast.  I knew what to use but not how to put it together.  That was a brief maybe 5 minutes and then it came to me.

My balance isn’t good occasionally but Thursday it was difficult to walk straight a lot of the time.

Roy asked me a question that I should know the answer and the answer was nowhere to be found.

Late in the day things got better and I went to sleep really early hoping that would help. I typically now sleep at least 12 hours every night.  When I’m in bed reading and then going to sleep is the time I am at peace.  There is nothing to figure out or remember. No one to try to say the right words to. When I got up this morning I felt much better.

I know that those of us with some form of dementia sharing on here and on Facebook groups help those who are the caregivers understand. It is very saddening to me when I read someone who is a caregiver wanting their loved one to change back to how they were, or they think their loved one is being stubborn, or honery. They may just be expressing feelings which are fine but when they actually think their loved one has any control over how they are or that their loved one doesn’t wake up every day and throughout every day wish they could be normal again, please please try to approach every obstacle knowing that your loved one would do anything to be normal again. Being mad at their loved ones doesn’t help anything.

Two things that have happened in the last few months are 1) losing my memory of the order of the New Testament and Old Testament books. That really might not seem like a big deal to most of you but I taught 3rd and 4th graders the Books of the Bible every Sunday for years.  I could say the books backward after all those years but when our pastor says “Turn in your Bible to XXXXX” unless it is a super easy one I have no idea where it is.  Super easy is like Genesis, Matthew, and Mark.  Our pastor preached through some of Romans for several weeks so I marked it with the page ribbon and that helps. He’s in Genesis now and I’m thankful since that’s an easy one!
The other thing is 2) I’ve sung hymns from Baptist Hymnals all my life and know all the words to all the songs.  I could sing without looking at the hymnal.  I can’t always do that now – knowing the words.  I’m thankful we have the words for the hymns or other Christian songs up on the screen.  There is something about knowing the words and being able to freely sing praises to God without reading the words that I treasured.

Well, that’s it for pieces of blogs that I started but never posted. I am dealing with an abscessed tooth and a possible dry socket along with the brain fun! I’ve been on amoxicillin for two weeks and Tylenol/ibuprofen for the pain. If not better by Tuesday I have an appointment to go back to the dentist and have a root canal. Imagine being crazy and in pain plus an abscess!

Life is Good! God Good! All the time God is Good!

It might not seem like it should be, but this was difficult to put together. It’s done and it makes me relieved to finally get these little pieces all in one place and out there!  I really do have to be doing better to put this together. I will blog as long as I can, I will share my love for our Lord and what he’s done in my life while I still can, I will read and learn as long as I can, paint rocks as long as I can and garden as long as I can. I love these things and they bring me joy! I thank God for that joy and all the joy He allows me to have in my life!

Ya’ll have a great weekend.

 

01.09.20 Dementia is an awful little disease

Dementia is an awful little disease.

There’s really nothing little about it.

You get a diagnosis and only share it with your closest friends and family. You do see a few of the deficiencies you haven’t had before but you work around it and go on.

Then you can’t read words well, sometimes. You don’t remember things that you just did or that just happened, more often. Other signs come more often and you share with others around you so they understand when you are “weird.” It starts to become frustrating but again you work around it and go on.

The people in your little world get used to you not knowing some or most of the words you want to use. You scale back your life to a simpler way and life goes on. Being mostly “with it” enough to see what is happening becomes much more frustrating and scary.

Then one day, years into this dementia journey the “sometimes” fog visits more often. There starts to be more reminders or signs that your brain functioning has declined. Little things like being mentally worn out after talking to others for a while. Frustrations become common when trying to make organizational plans for things like traveling, writing blogs, or keeping a house running well.

You lull yourself into enjoying that time of doing well even if it wasn’t perfect. Those days become the good old days when out of the blue a big strong downward dip starts.

I’m having a difficult time knowing how to describe what this downward dip in dementia looks like but I’ll try.

Since last week I’ve been in a deep fog. I had a big brain block while I was trying to remember that we went to the pharmacy last week to pick up some medicine. Soliqua. That morning I wondered about what happened to the soliqua (diabetes injection med.)  I called Roy who had gone into town for his physical therapy to see what he knew about it. He told me we did go to the pharmacy the day before and I was with him. He said we went after our dentist appointment.  He told me he was able to get the pain/antibiotic medicine filled the day before but they didn’t have the soliqua ready.  I didn’t even remember going to the pharmacy and didn’t remember anything about the soliqua. Once he told me this I was able to remember him handing me the pain/antibiotic medicine but nothing else.

Several times recently Roy has had to tell me something like the “going to the pharmacy event” that happened that I don’t remember. I question him and question him and still no memory of the event happening.

Earlier this week, I woke up when Roy came into the bedroom at 12:15 (right after noon) and picked up my arm. He thought I looked dead and said it scared the mess out of him:(  I went to bed at around 8 the night before and while I do tend to sleep until 9 or 10 am a lot of the time not awake at 12:15 is not normal. When I wake up every morning my routine is to check everything on my phone, weather, Facebook, emails, text messages. The day I woke up after noon while doing that, my nerves caused my hand to jerk several times so bad I dropped my phone over and over

This has happened before just a little bit this morning was the worse. I could have easily gone back to sleep then I was so tired but I stopped myself. When the jerking stopped I got up. I was way off balance for a long time after getting up. Later I was dizzy like I use to be a couple of years ago.

Right now my thinking of what I am going to say has just stopped. This is taking me hours to put together but my typing is good, my ability to put a sentence together is okay. I just can’t think through it.

Yesterday was been difficult but different from the day before.  We went to the urgent care here to get help for my cough. Since it was my first visit there, there I had to fill out forms. I’ve done this dozens of times, know all the answers but I could not remember a lot of the answers. I had to get Roy to help me. I never need help with those. He had to help me answer questions when I was in the room being checked out.

After that, we went to North Oaks Diagnostic Center for a medical test. I hid some rocks at the building next door before heading inside.  I got lost and scared trying to figure out how to inside. We agreed Roy won’t let me go off by myself in the future.

Wednesday was different but equally frustrating. When I got up to walk my legs and arms felt like they each had a heavy weight attached to them. The weight pulled my legs down into a crouch and I had to walk like that. It was so exhausting I couldn’t walk more than a few feet. While moving laundry from the washer to the dryer I was wiped out and had to hang on to the washing machine by putting my arms inside and hanging on.  I called Roy to help me and of course, he did. That weird weighted down feeling lasted all day. Cooking dinner was only accomplished by me sitting in a chair and Roy helping me. This was just a crazy day.

I only had a little bit of the weighted down feeling when waking up on Thursday. This and several other things left me and Roy frustrated and exhausted today.

This latest strong downward dip is a big unwanted step in my dementia journey. It hasn’t happened in a long time and pretty much overwhelmed me and Roy.

I really appreciate your prayers. Thank you all. I am looking forward to the next few days where we can stay home and get some things addressed while I am hopefully less confused.

It is 7:00  pm on Thursday night. The deep bad fog and confusion are mostly gone. Praise God! It will take a while to know what level my thinking and abilities are at now. Life is always interesting and God is always on His throne! And He is my God and I am His child. It doesn’t get any better than that!

09.01.18 Some Things I Learned About Dementia – Brain Healthy Foods, Reposted from 09.01.15

blueberriesSeptember 1, 2018 – I wrote this three years ago, seems like yesterday.  My blood sugar and A1C are significantly better than they were back then.  My blood pressure (without medicine) is now under control.  Not sure about recent cholesterol since I stopped taking medicine for that.  I have an appointment with Dr.Valdes to go get current blood testing and check all of my medicines to determine what I should still be taking.

Our eight blueberry bushes are being moved into the full sunlight in a week or so where hopefully they will make blueberries in abundance for me to gobble up on since this is one of the best brain foods around.  They are fairly expensive in the grocery but they are so helpful!

 

Tuesday, September 1, 2015 – Several months ago the focus of my shrinking brain journey turned to eating brain healthy foods as a way of pumping up what’s left of my brain!!!  I really don’t know if it’s working but I have lost 20 pounds and know that just overall healthier eating is good for my whole body, not just my brain.

I also have Type 2 diabetes and have had difficulties controlling my blood sugar.  Since eating most of the items below and cutting out most of the junk I previously ate, my blood sugar levels have also come down some.  If you’re concerned mostly about sugars look each food item up and learn about that aspect.

I’ve been asked several times what is considered brain healthy food. Sometimes I forget some of it, so I thought if I put it all down here you’ll know it and I will have one place to go to remember it!!  This information comes from various sources.

Every source I’ve checked lists blueberries, spinach and nuts as the three highest foods to improve brain health.  I can’t say in what order all the rest melonsare ranked in brain healthiness so pick what you love and eat those!!

The list below tells the name of the food, the recommended daily amount if it is known and what I actually eat.  I consider this a list of foods I previously would have felt were splurge foods.  Since I’ve cut “almost all” unhealthy foods out of my diet I have the money to eat the “splurge” foods and really enjoy them!

I offer this list as someone who is absolutely not an expert in great brain food.  If you’re 60 or older and have noticed some cognitive decline, give it a try.  If you’re young and want to eat foods now that may help you later in life, give it a try!  If you’re a caregiver for someone with dementia, absolutely give it a try.

Eliminating as much sugar and bad fats are key!  If something below contains that, eat in moderation if you must eat them.  Also, WATER, WATER AND MORE WATER are a must. As much as you can, as often as you can and then drink some more!

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Blueberries – 1 cup a day in any form, fresh frozen or freeze dried – These are the very best for your brain and I avocadoeat them everyday.  Always keep frozen ones available for when the fresh run out.  Adding frozen blueberries to hot oatmeal is delicious!!!  Haven’t tried freeze dried but I’ve had blueberries covered in yogurt which are delicious.

Strawberries, blackberries, blackcurrants, huckleberries – Not as high as blueberries but delicious and worth adding to the diet.  I eat all of them whenever I can get them.  I try to keep on hand frozen strawberries, pineapples, blackberries and mangoes.

yogurtYogurt – a cup a day – I buy low fat Dannon vanilla yogurt because of the low fat, it tastes good and it’s fairly cheap.  I buy two large containers each week and that gives me a cup a day to add to smoothies or fruit bowls.  I’ve learned that smoothies are best for if you don’t have time to sit down and eat a bowl of fruit but the bowl of fruit is the better of both choices for you.  I daily make either a smoothie or a bowl of three types of fresh fruit, granola, flax seed and chia seeds mixed together.  You don’t taste the flax or chia seeds but they are very good for you.  You can buy small pouches of them for under $1 each that last for a couple of weeks.

Salmon, albacore tuna, sardines – 4-ounce serving, two to three times a week. – I love tuna in just about anything!  The others won’t make my grocery list!!

Mangos, bananas, kiwi, grapefruit, pineapples, cantaloupe, watermelon – at least two servings a day.  I eat all of these as much as I want!

Green and black olives – a few a day – I eat a can of black olives whenever I want to about once or twice a week.

Nuts and Seeds – an ounce a day of walnuts, hazelnuts, Brazil nuts, filberts, almonds, cashews, peanuts, sunflower seeds, sesame seeds, flax seed, and unhydrogenated nut butters such as peanut butter, almond butter, and tahini. – Walnuts and Pecans are the best, I eat at least 10 a day of nuts2walnuts, pecans, almonds, cashews, shelled or in the shell peanuts, and sunflower seeds.  I sprinkle flax seed and chia seeds on anything I’m eating in a bowl.  See my note about this in Yogurt. Also sunflower seeds (peeled) make a delicious addition to any salad!!

Avocado – 1/2 of an avocado to one daily. – I make avocado and sliced cucumber sandwiches , put them in salads and eat them with some italian dressing, and guacamole!!!  If you do not like mayonnaise use the avocado instead of mayonnaise on any sandwich!! This is a new addition to this information:  Avocados can be frozen by cutting them in half, taking out the pit, putting them in a freezer ziplock back and removing all the air (I use a straw).  When they come out of the freezer and thaw they are perfect!

Red wine – one glass a day – I don’t drink this every day but sometimes.

Celery, carrots and peppers – I buy a bag of fresh carrots and whole celery every week and much whenever I feel the need for something crunchy.

Broccoli and Cauliflower – 1 cup a day –  Raw is best – I love it that way and cooked (I only buy fresh, not frozen)

Whole grains –  Whole grains, such as oatmeal, whole-grain breads, and brown rice – I choose kaleoatmeal and whole grain breads.ark Leafy Vegetables –

Kale (a super food), collard or turnip greens, spinach – a handful a day – I stick with kale and spinach.  Kale or Spinach in a fruit smoothie is my preferred method of eating it.  You do not taste the kale in the smoothie but you’re getting the benefits!!  Kale can also be baked in the oven – toss in some olive oil, salt and pepper it, layer on a pan and back until crisp.  Spinach I love in salads also.

Beans – 1/2 cup of any beans will do.  I prefer red beans but then there is the sausage and fat that goes into the flavor so I skip beans mostly1

Pomegranate juice – Because pomegranate juice has added sugar (to counteract its natural tartness), you don’t want to go overboard,so approximately 2 ounces a day, diluted with spring water.   – This hasn’t been on my list but I’m going to give it a try!

Freshly brewed tea – Two to three cups a day of freshly brewed tea — hot or iced – Must be fresh brewed, not powdered.  Don’t add all the sugar and cream, a day of lemon juice adds an interesting twist!

Dark Chocolate – One-half ounce to 1 ounce a day

Crabs (also shrimp, lobster, crawfish to a lesser degree) – Eat as much as you want, I do!!! Crabmeat salad and boiled crabs, shrimp and crawfish. Fairly certain that only boiled seafood should be eaten for any type of diet!!

Tomatoes – one a day, don’t really know.  I buy enough to eat one a day whole if I want to.  Feels more like a treat that way!!shrimp crawfish crabs crabs

Curry contains Turmeric.  Haven’t tried it yet.

Eggs specifically, the yolks – one a day or more at once.  We eat egg salad sandwiches, scrambled eggs, sliced eggs on sandwiches, omelets, etc. but  not very often.

Pumpkin seeds – a handful a day – gonna add that one soon!

Add high, but safe, levels of B6, B12 and folic acid through vitamins.

I’m sure this isn’t every food that is brain healthy.  If anyone has additional items that should be on this list, let me know and I’ll add them.

I’ve enjoyed getting to splurge on these treats knowing they are helping, not hurting, me!

psalm 91 15

 

 

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

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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!

 

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Click on the links below to go there!

Dora and the Explorers

Wacky Wonderful Wednesdays 

08.14.18 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_nOriginally posted January 2015 – This 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 the 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

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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 

08.08.18 How stress can change your 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!

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

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.

Image result for KINDNESS SCRIPTURE QUOTE

cooltext1838781539Click on the links below to go there!

Wacky Wonderful Wednesdays

Some Things I Learned About Dementia

02.17.18 We’re Moving – Some Things I Learned About Dementia!

I have been writing 3 blogs for the last few years.  My own dementia has progressed to the point where I can’t do that without a lot of frustration and even failure.  There are a bunch of people following this blog so I want you to know where the information will now be posted that would have been posted here on Some Things I Learned About Dementia.

Our personal blog is called Dora and the Explorers.  We live in a motor home and travel most of the year (until recently) Dora is our motor home, Boots is our truck we tow behind Dora and we are the Explorers of all parts of the United States.  Just wanted to explain the blog name!  Our granddaughter Madisyn helped us name all this early on in our RV planning stage.  She was only 3 when we started this and Dora was her favorite television show.  She was not real sure about having Grannie and Paw Paw gone a lot of the time so letting her come up with this helped her comfort level greatly.  She loves to say that we get inside of Dora through her ear (door) and when Dora makes funny sounds she says Dora’s tummy is grumbling!

The web address for Dora and the Explorers is http://rosalynandroy.com

I will still be sharing dementia information I find and information about my own dementia.  I’ve felt strongly from the beginning of my dementia journey that sharing and helping educate caregivers and dementia patients was something God laid on my heart to do.  I will continue doing that at our personal blog.

Some of you now receive an email when I publish this Dementia blog.  If you would like to get an email when I publish something (dementia related or otherwise) on our personal blog go to the blog at http://rosalynandroy.com and on the right hand side there is a place that says Follow Our Blog.  Enter your email and when you are sent an email, please confirm it.

The third blog I’ve been writing for a few years is Wacky Wonderful Wednesdays.  Like the web page says, my hope is to give you a midweek uplift a few giggles and lots of smiles.

I am an encourager by nature and love finding funny, heartwarming and downright silly things to share, hoping to make someones day a bit brighter.  This use to be a weekly blog but I can no longer handle that.   It’s become a whenever I can do it blog and comes out on any day of the week. Suprises!!

Our personal blog will now contain all three blogs: personal including our travels, dementia and wacky fun stuff.

Thanks for following this blog and I really hope you will follow our personal one.  Take care and God Bless Ya’ll!  Rosalyn Chauvin