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

September 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 are 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!

Blueberries – 1 cup a day in any form, fresh frozen or freeze dried – These are the very best for your brain and I eat 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.

Yogurt – 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 walnuts, 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 oatmeal 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!!

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!

 

Click on the links below to go there!

Wacky Wonderful Wednesdays

Some Things I Learned About Dementia

 

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/

Click on the links below to go there!

Wacky Wonderful Wednesdays

Some Things I Learned About Dementia

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

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!

 

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

Originally 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!

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.

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:
|I 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

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

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

Harry 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

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,

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!

Click on the links below to go there!

Wacky Wonderful Wednesdays

Some Things I Learned About Dementia

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.

When Language Fails in Dementia

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

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

What Do Aricept, Exelon & Razadyne Do?

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

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

Ya’ll come back now ya’ hear!

Click on the links below to go there!

Wacky Wonderful Wednesdays

Some Things I Learned About Dementia

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

Thursday, July 12, 2018 – I haven’t written about my dementia lately nor have I shared information about dementia that I’ve found in my reading.  Mostly because I haven’t been able to absorb much lately and putting the information out there just wasn’t happening.

All dementias are different so what is commonly thought to be what memory loss looks like can be very different from individual to individual.  I have new learning deficiency, short term (recent) memory deficiency and others including Executive Function deficiency. If I can help others understand that there is no one way that people lose their memory that would be a big accomplishment.

This article below is about one of the aspects of frontotemporal dementia which is one of the aspects that affects me a lot, Executive Function. When I saw the article from Alzheimer’s Reading Room in my email I thought I really should share this.

From the article:

Executive function is an umbrella term for cognitive processes that regulate, control, and manage other cognitive processes. These processes include planning, working memory, attention, problem solving, verbal reasoning, inhibition, mental flexibility, task switching, and initiation and monitoring of actions.

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

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

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

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

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

Deficits in Executive Function in Alzheimer’s and Related Dementia

By 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.

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

Original content the Alzheimer’s Reading Room

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

Ya’ll come back now, ya’ hear!