More About Brain Insulin and Dementia ... The Information Keeps Coming!

Today's food world is ripe with all sorts of "comfort foods" that we love to ingest and savor.  Yet, all those carbohydrates and sugars are anathema to good health.  This has been served to us daily with reports in the media, politics, and in regular conversations.  Yet, nothing is as good as, say, Cheetos dipped in sour cream or that Voodoo donut - I prefer the maple bars with bacon - for a devilish snack.

In moderation, these types of snacks are fine - in moderation, that is.  Everyone has their own definition of the term, but reading the portion allotments on the packaging or just having one in a blue moon would help - if you follow the instructions, that is.

Why is this becoming more important for the general population to observe?  Because scientists are beginning to understand the role of insulin and the brain, as well as the body, and the number of those with Type-II Diabetes is increasing.  This is a cause for concern as these are those who may be more susceptible to dementia in their futures.

According to Dementia News, and as  I posted February 26, 2015, there is very much a link between dementia and brain insulin.

IN the article/documentary on Alzheimer's, produced by HBO, they speak of the need for insulin to regulate and produce glucose in the brain.  What they were able to observe was that increasing the glucose levels in the brain produced better cognitive function.  As the glucose levels rose, the pancreas produced more insulin.  When they blocked the insulin from production there was no change in the cognitive levels.  Therefore, it seems easy to deduce that working with those who are demonstrating changing cognitive function (AD, LBD and other dementia patients) could greatly benefit from such work.

Since 2012, the studies have been ongoing (perhaps earlier than this); however, it's interesting to note that not much play has been given in the media, nor on the support sites, either.

This is, indeed, intriguing.

There are many articles on Brain Insulin and Dementia.  

Here are Some:

Insulin in the Brain - HBO

Diabetes on the Brain

Type 2 Diabetic Alzheimer Dementia and the Insulin Connection

The Alzheimer's and the Sugar Connection

Study Says that Blood Test for Brain Insulin Resistance Accurately Predicts Alzheimer's Risk

Are Alzheimer's and Diabetes the Same Disease?

Feisty and Still Raring to - - Rest...or The Week Ending 03/15/2015

Another week has passed.  Not much newsworthy - Except - - - -

On Wednesday, the Ladies came by for their visit.  I had asked them to get Mom to try on her new pants.  Well, after Scrabble, chit-chatting and all, Mom was too tired when asked to try them on.

Seriously.

When they brought them out, Mom sat in her chair and declared her inability to do anything but rest.  Arrrrg!
So, I tried phoning to see if the staff at St. A's would be able to get her to make an attempt.  Nope!  She flat out refused.

So, how do we get this woman to try on new clothes and toss aside those that are looking well-worn?

Today I came in with two new tops for her to try on.  I had exchanged the ones from last Sunday and Mom reluctantly agreed when I stated she could just fit it over what she was already wearing.  Sighingly, begrudgingly, and snarling, she agreed.  These were but one size smaller than the ones previously - but she stated they made her look too busty.  I mentioned that it wasn't the shirts, themselves, and she gave me the evil eye.  Then, she continued wearing the blue one over her blue paisley long-sleeved shirt.

She took off her bone necklace and talked about putting the shirt in the box with it.  To be honest, I was confused.  So, this led to a chat about her necklace.

We also spoke of the trips she had taken to Mexico, which, at first, she denied ever having taken.  I spoke of the trips to the Yucatan to visit the ruins with Dad and friends, trips to Acapulco and Mazatlan with Nadya and Dad.  She stated they never happened.

Then, she began speaking of one trip down there and her memories of how wonderful it was as if the previous comments and discussion had never been.  Oh well.

Finally, the pants.  

I told Mom she needed to try them on or we weren't going anywhere.
"I'm too tired for all this!" she exclaimed.  "I need to sit down and relax!"
"You can do that after you put them on and show me how they fit.  Just one pair," I commanded.
"You try them on first.  They look as though they'd be better on you."
"No.  I bought them for you in the ladies' section of the store.  I need you to try them on to see if they fit, or if I need to exchange them for a smaller size.  Now, stop wasting my time and get busy."
Finally, she took them and went into the bathroom.
In a few minutes, she poked her head out.
"Hand me the pants."
"You have them, already, in the bathroom.  They're the black ones."
"No, you were going to put them on first."
"No, you took them with you.  Look inside the bathroom, again."
She found them.
She came out and they were just a tad billowy.
"I feel like a freak.  I can't wear these, the other ladies will make fun of me."
"They don't look that bad.  Are they comfortable?"
"I think they're too big!  I want to take them off right now!"
She went back in and changed.  When she came out she demanded a look at the other two pairs I'd bought.  She was horrified at their size.
"I don't wear anything this large!" she declared.  "I wear a 1x if anything."
"Well, I bought the same size as what you have on now."
I put them all in the bag to take back, but she wanted to keep them there.  Ha!

From there we went to Jean's house for a delightful lunch of tilapia, potatoes, and salad.    Mom had ice cream with chocolate sauce after, as well as an apple fritter.  She was quite content.

She acknowledged the flowering trees and the buds bursting forth as we drove.  On the way home the wind was blowing rather hard and we saw a number of fallen branches and trees, as well as power outages at the stop lights.

When we returned the facility had just lost power.  We told Mom this, but she was a little angry when she went in to use the bathroom.  I reminded her, but she said something about people needing to be a little less careless.

So, despite her 'fear' of new clothing, we made headway and it became a pretty good day.  

In the Beginning? Would Recognizing the Signs Have Done Much Good?

After many months and thoughts, it would appear that the onset of LBD with Mom might be more apparent.  Yet, nothing is, as how much we take for granted and small slips of the mind may go unnoticed and unnoted.

So it may have been for Mom.

After Dad died, Mom became lost after driving me to the ferry many miles away, a drive she'd made so many times - but that was due to grief.

The time when she was driving home from the beach house and was on Hood's Canal and fell asleep, hitting the guard rail and pulling over to stop before launching into the cold and dark depths of the sea - but that was fatigue.

The frantic phone call about her printer not working, having checked the plug and everything else - only for me to discover the plug was inserted, but not pushed in fully (then it worked).

The remarks from her cousins visiting at the beach asking about Mom's health, and how she didn't seem herself - taking naps, and not being as active as once she had been.

The inability to understand her television and cable relationship, although it rarely changed throughout the 20 years she had it - and the need for me to call the cable company and internet company to fix it so she could stop going without (this would last a few days after I'd done just that at her house).  And, to make things worse, she would chuck all instruction manuals and a few of the remotes, as well.  But this was typical - she didn't see the need for them (until I asked her to refer to them).

The slowing down of her step over recent years, and the wonderment in her eyes when she discovered her rental car card wasn't American Express or Entertainment cards in the Empress Hotel in Victoria.

Were that these happened within a quick step of each other then, perhaps, we'd notice - but given Mom's inability to understand technology (even though once she'd been quite adept), and the sigh of relief when the emails (many per day) that she forwarded to us before she'd even read them stopped.

And, we cannot forget the phone calls!  One brother received 13 in 24 hours.  I was used to receiving up to 7 with denials that she made any.  It was all so very confusing!

Then there were those stories about people she shared but weren't true.  <sigh>

But, to be honest, it made bringing movies she'd be interested in easy - there were so many she liked in the past but had absolutely no memory  of ever seeing.   That's when I began really wondering, but attributed it all to her age.

She also began sleeping more - to the extent that many times I would be tempted to trot into her room and put a small mirror under her nose to be sure she was breathing.  Luckily, she arose not long afterward.

From a distance, we can see some changes that may not be obvious to someone who sees her often.   But, even if we had taken note, what could we have done?

When Mom was admitted, she was on the cusp of being too able; that changed in less than a year's time.  And, now, we are understanding and seeing so much more that we cannot dismiss it, at all.

Who knows what adventures are ahead?

From Whence Did These Lewy Bodies Come?

Recently, I've noticed that people figure that being afflicted with dementia is a crap shoot.  And, they're pretty much on target, so far as I can see.

Of course, there are the other things, like, FACTORS that may help stop the madness, but nothing is 100%.

Diet, exercise, clean living (meaning no smoking anything, being moderate in alcohol, etc), and keeping your brain active with learning, reading, etc. will help stave off mental degeneration, perhaps.

But it dawned on me at the same time as I was pondering my chances that we haven't really any clue as to from where these little buggers came from.  Well, we actually do, but it's nice to re-iterate it as none of us has much control over their appearance (or so they tell us thus far).

Well, it begins when the proteins in the brain begin misfolding.  It's just something that seems to occur.  And it's not just LBD, Parkinson's, Alzheimer's and other forms of dementia that are results, but diabetes, too, can be caused this way as well, and toss "old age" into the hat while you're at it.

How does it work?  Why does a misfold create such a nuisance?

With age comes little "misdemeanors" of processes.  When the proteins misfold it isn't only one or two, but many that may happen.  This sets off a reaction.    This cannot be undone, at this time.

According to Dr. David Ron, at the University of Cambridge:

Proteins are central to the function of all living beings and maintaining them in proper condition (known as their ‘folded state’) is important to health. It is now apparent that protein misfolding contributes to many diseases of ageing, such as dementia, diabetes and even the physical feebleness of old age. To delay these undesirable processes we need to better understand how cells and tissues (in which protein misfolding is played out) adapt to this problem and then we must seek ways to strengthen favourable adaptations and discourage unfavourable ones.  (Misfolded Proteins in Dementia and Ageing)

Which is somewhat disheartening as there is no way to reverse the process at this time;  I suppose there would be more hope would there be a way to catch the misfolds at their onset, but how would you know?

You don't. 

Next, we have the normal chemical reactions taking place in the brain all the time.  A-synucleins are a normal part of the brain's chemistry.  However, these too, seem to have a way of becoming a little wonky and can, therefore, become (from what I'm gathering in my reading) anomalies in themselves, which then create the new form known as Lewy Bodies.  

While the A-Synucleins help with the regulation and production of the dopamine and acetylcholine in the brain (which keep the brain healthy and working correctly), the secondary units of Lewy Bodies begin the war against such processes and block the productions and then begin to sever the neuro-connectors that are necessary for movement, thought, and other processes in the brain.  

Wow.  I do hope I sound as though I know what I'm saying.  It's pretty much technical for me.  But, it begins the thought that if they know this much, at this time, then the road might be brighter sometime soon.  

If only there were a way to make it like a children's picture book.  

Resources:

Misfolded Proteins in Dementia and Ageing  Cambridge University

Alpha-synuclein Biology in Lewy Body Diseases  Alzheimer's Research and Therapy

Dementia with Lewy Bodies   Johns Hopkins Medicine

A Resting Point On the Way Down....or The Week Ending 03/08/2015

A Bittersweet week.

Wednesday, the girls (Connie & Jean) came to see Mom.

She was wearing her blue capris which had torn on the seam, but she didn't seem to mind - however, the girls were able to convince Mom to change, so they could take them home and mend them (Mom told them I would be doing the mending - HA!).

They played a good game of Scrabble, with Mom being more agreeable than she used to be months ago.  She did make an inquiry about allowing her mother to play, but the ladies were able to tell her she was otherwise occupied.  Mom accepted this without complaint.

Tonight, my brother came and picked her up and took her for a jolly drive to Mount Angel.  This was very good for her spirits, just to get her out and to see the world.
When I arrived they were having a nice conversation on the patio with lemonade and iced tea.  Mom was happy looking at the plants and trees that surround his property.  At one point, she gazed at the two sugar maples and remarked, "They look like a man and a woman having fun."   Now, with the gnarled branches free from leaves it was difficult to say if that was the sort of fun that I would care to print....
She had troubles finding her words and thoughts.  As Connie stated earlier last month, Mom slipped from one thought to another seamlessly, and many times had troubles finding the words she was wanting to use.  She is aware of this and says she can't get the words.
At one point, she told us she had my oldest brother when she was 13, but that thought was quickly obliterated in the next thought.  Whew!
She was back to being her wonderful self when I tried to bring her to the table to eat.  She wanted to keep reading the book she had and stated that it was too early to eat (then my brother prompted her by telling her it was on the table - she acceded).
On the way home we had a very nice conversation - about what I have no idea - it was all so random, but it kept her content.
When we arrived back at St. Anthony's I asked her to try on some new clothes I had bought her earlier.  After much cajoling, she capitulated and tried on one blouse - it was too big.  The pants will have to wait until the girls come for a visit this week.
So, her memory has declined as have her speech and movement.  This is a slow train to ---??? I'm hoping it's slow and the hills doesn't suddenly show a decline on the way (at least not in the near future). 

Inside Mom's Lewy Body Affected Mind Part Two (What I Believe It Must Be Like and...Voilà!)

Have you ever had one of those dreams that truly seemed so real it was hard to shake off?  The vestiges of it stay with you for a great deal of time?

I recall a nightmare I had involving sound and people fighting "Andy Capp" style; they were in a large ball rolling through the house sawing through the walls getting closer and closer to me.  The sound of the water in the pipes, as my father took his shower in another part of the house, gave the dream the finishing touch.    I remember it vividly.

It came to me recently that this is similar to Mom's situation; except that she is living the dream.  She is neither asleep nor awake - but fluctuating between a sleepy and a dreamy reality - her wakefulness and her dreams are her realities, but unlike the majority of us, there is no strict partition which tells her on which side of the sandman she is.

Her speech is affected - think of what it's like to speak to someone who's in slumber; their speech is slurred, mushy, usually unintelligible, and typically non-linear.  It's difficult to make heads or tails of.  Much the same can be said of Mom.   And, yet, there are just as many times when she speaks clearly - but her thoughts are muddled and unintelligible.

She may as well be sleep-walking.  This can account for her delusions of performing tasks with my grandmother, having events with my brothers, and her siblings, She deludes that people are dead, and even if they're sitting directly across from her this is her reality.

There's truly no other way to put it.  While spending time with her it becomes obvious.

How then, can she walk?  With LBD, the body doesn't go into normal paralysis while sleeping.  This can be seen as typical of those who do sleepwalk.

She never did this before, but it helps to believe this.  It makes sense.

Dreams are also surrealistic, and non-linear.  This accounts for so much of her thinking.

You try to make sense of your dreams...

So, when people ask me "How's your mom?"   I may actually respond, "She's really sleeping well!"

Inside Mom's Lewy Body Affected Mind - Part One (the intro)

Because recent events have occurred, it dawned on me what it must be like inside Mom's mind.  Seriously, it means taking my imagination and delving into a dream world of reality (there's an oxymoron for you).

I'm not that sure anyone really understands what I tell them, and I shudder to consider filming it as that might seem a bit lurid and using her in a shameless and humiliating manner.  

Following is a clip of a trailer by a man whose father succumbed to LBD.  This may/may not be what we should expect, as Mom is still calm.  For some, the man in the clip may seem a little belligerent, but to me he seems playful.  

Although the subject following doesn't truly parallel the experience we have with Mom, he is in the late stages of Lewy Body.  I wanted something that would reflect her, but we must remember there are others out there dealing with this disease on their own terms.  I'm sure you'll appreciate this filmmaker's experience.

It's one thing to look on the surface, and understand that there are changes going on in the brain which aren't, exactly, positive.

If you go back and look at the man, himself, and realize he seemed normal and then LBD came and changed his entire world.   Luckily someone was there for him, but for many there is stark solitude and neglect.

I did try to locate a clip of a neuron affected by LBD, but no site seemed to have a short clip, and I didn't wish to subject anyone to a lengthy film which was to serve such a tiny purpose.

Then, I realized it might be better to write about her thinking as it presents, as it may be of more interest.

To be honest, I did want to keep this posting short, but after considering its length, it seemed best to put it into 2 parts.

Consider this the introduction and Thursday's post the actual post.

I hope you find this intriguing and useful.

Fear No More the Heat o' the Sun...or the Week Ending 03/01/2015

A rather normal week.

Some physical therapy.

A wonderful visit from Connie & Jean (aka the RLC - Retired Ladies Club).

The ladies played Scrabble and had a nice chat.

Jean took some of the clothes Mom has and separated those bought last August which she refuses to believe are hers (as they still have tags) into one bag, and the other for donations.

I had asked if she could possibly mend Mom's blue pants, and she had agreed - however, Mom decided to wear them that day....<sigh>

As Connie and Jean drove home, they discussed the differences in Mom.  Connie noted that Mom is able to change focus and topics in one sentence several times seamlessly - if you weren't paying attention you would be even more lost than, perhaps, you would be if you were listening intently.

This evening, Lawrence picked Mom up for dinner and took her for a tour down the Columbia to Ranier and then over to Vernonia.  Mom seemed to enjoy the ride,

She was tired when they arrived, which is par for the course, or so it seems.

We ate well, and Mother graced us with her insights on a variety of subjects - which varied throughout her sentences (seamlessly). My brother had just gone to New York to visit his daughter in the city, and he also was able to visit with some very close friends, which he mentioned.

Mom with her four sons June, 2009

As he went outside to grill the chops, Mom told me those very same friends had phoned her that morning for some help, which she was able to do.   She also mentioned her mother had come by and they had put together some different items for her.  The list could go on.

We left after dinner, Mother quite tired, but limber enough to get out of the car easily.

I gave her some travel magazines which she loves to go through for the pictures.  She stated that she would go through them and find a journey the two of us could, possibly, take when I had the time.  I smiled and kissed her goodnight.

She seems more content now, and there is a softness about her that never truly existed before.

I wonder which shoe will fall next, though.

Brain Insulin and Dementia - There IS a Link!

If you've been a regular follower, you'd have taken note that Mom loves milkshakes, chocolate bars with almonds, and mango-strawberry muscat wine.

Our grandmother, who died nearly 31 years ago due to complications from Alzheimer's was also a glutton for the sweets (cakes, pies, ice cream, but not candy-candy).

So, I began to ponder: "Is there a link between sugar and dementia?"

It would seem the answer is: "Yes!"

Apparently, with dementia comes a resistance in the brain to insulin.   This, in turn, may lead to a decline in how the brain is able to function, properly.

"Our research clearly shows that the brain's ability to respond to insulin, which is important for normal brain function, is going offline at some point. Insulin in the brain not only modulates glucose uptake, but also promotes the health of brain cells - their growth, survival, remodeling, and normal functioning. We believe that brain insulin resistance may be an important contributor to the cognitive decline associated with Alzheimer's disease," said senior author, Steven E. Arnold, MD, professor of Psychiatry and Neurology. Arnold is also the director of the Penn Memory Center, a National Institute on Aging-designated Alzheimer's Disease Core Center. (Brain Insulin Resistance Contributes to Cognitive Decline in Alzheimer's Disease)

Isn't this intriguing?

...there is no evidence that the brain in Alzheimer's is hyperglycemic. Insulin acts differently in the brain than in the rest of the body. Researchers found that insulin resistance of the brain occurs in Alzheimer's disease independent of whether someone has diabetes, by excluding people with a history of diabetes from this study.(Brain Insulin Resistance Contributes to Cognitive Decline in Alzheimer's Disease)

The truth is, you are more susceptible to dementia if you have diabetes, but it's not a guarantee; moreover, if you find yourself craving sweets more, it could be nutrition-related, rather than having to do with anything else.

Studies at UC Davis results did not consistently support a hypothesis that increased sweet preference is a nonspecific form of disinhibited behavior related to declining mental status. Also, studies then did not consistently support a hypothesis relating sweet preference to serotonin activity within the brain. More research is needed because craving for sweets does not mean someone is developing one of the dementia illnesses.(Brain Diabetes, Craving for Sweets, and Dementia Patients Snack Preferences)

Now, I remember how my grandmother nearly finished off a cake in one night, causing Mother to accuse my cousins of actually consuming it - but then we caught her sneaking in the last piece.   You'd have never known, as she was as svelte as she was in her 20's.  

Mom, on the other hand, began to grow lethargic, and we found large amounts of dove ice cream bar wrappers in her trash when we'd come to visit.  Mom would deny their existence, but there they were.  I began to wonder if there was a connection between this and our grandmother's affliction but put it in the back of my mind, until now.  

They do say, though, that if they could break the blood-brain barrier on this brain insulin problem, they may be able to begin to resolve dementia, if not reverse it.   

Something to mull over a malted, perhaps? 

Resources:

Brain Diabetes, Craving for Sweets, and Dementia Patients Snack Preferences

Brain Insulin Resistance Contributes to Cognitive Decline in Alzheimer's Disease

Dietary Preference for Sweet Foods in Patients with Dementia

The Alzheimer's and Sugar Connection

The Choices We Make With Dementia Patients

Don't you just hate it when someone says, "You always have a choice!"  It's one of those adages that can make you want to smack them on the side of the head.  But, the reality is that you do.  We don't always want to hear it, though, but we realize the options are there, whether we want to see them or not.

Mom with her siblings (l-r  Peter, Mom, Larry, Suzie) April 1984

The other day, in the LBD support group I attend once a month, I was discussing Mom's decline.  One of the attendees offered her condolences and asked if I found myself at odds when with Mom.  I had to respond with a resounding, "No!"

Not that her decline isn't concerning, nor that her issues seem to be growing, but it's something I find myself enjoying, to a degree.

Mom was never an easy, lovey-dovey type.  She could be harsh, cold, calculating, and spiteful, even when there was no cause. There were also the times of the opposite. Yes, there were times when she could be agreeable, and we did have wonderful vacations and good times, but I doubt any of us could dispute she was never the type of mother you'd run to in times of hurt.

Yet, now, she's quite a sweet, mostly agreeable sort.  The roles we play have reversed, and, although there are times, she makes for a mostly delightful time.  Albeit she can't always find the words, and there is confusion in her thinking (to the point where you have to be on your toes mentally to get to where she is), there is a pattern she follows and a method she appreciates.

Mom feeling swanky in 1966

There are days when I wonder if I really should go see her, but then when I do there she is hungry for attention and adventure.  A simple walk can do it for her, now, and there's nothing better than to tire her out!
And her expression when she gets any form of ice cream.  Priceless.

I suppose that, now, the choice is whether or not to weep over the life that seems to be lost in the vessel that was once her or to celebrate her life as it is and has progressed.
I'll have to choose the latter as it marks a new beginning in her relationship with us all;  however short-lived it is. 

Clothes Shopping and The Week Ending 02/22/2015

The weather this week has been breathtakingly beautiful.  The sun has been out, the trees are budding, crocuses and daffodils are beginning to spring up (Sorry East Coasters...).

Last week, watching Mom I was wondering if the onslaught of bright sun and the early emergence of Spring would bring her back to some extent.  It did - partially.  Staying awake seems to be much better; however, her speech and her linear thinking have remained in the decline mode.

This week she had BINGO!  She had Physical Therapy!
They forced her to Bathe (they told me she was very angry about this, but she stated she didn't know what I was talking about as she bathes every day - typical Mom...if she does remember, then she's seething inside!).

Connie and Jean came for a visit and they took her to Ash Wednesday Mass where Mom stayed alert all through the service.  It was a good visit, but the ladies are truly beginning to notice her efforts to make sense of her speech and words.

Upon my arrival, she was sitting with a cup of coffee mulling over her day.  She said that she'd been  visited by some people and they discussed some papers.  She couldn't articulate anything more but that they'd then just disappeared.  Upon verifying the story, it was apparent this had been a dream, or a hallucination that occurred at some point.

As we walked over to her room we saw one of the attendants and Mom asked her if the door in front of us was storage.  The aide looked to me and I told Mom it was her room.  She was happily surprised.

It took very little time for her to get herself ready to leave.  She did put on a jacket that is now far too small for her, and so she settled on a larger one she'd been refusing to wear (and she did this without any issues!).

As we drove to Lloyd Center she kept speaking of the wonderful flowers on the trees, and how it will be a shame when the trees begin to leaf.  Why?  They will exhibit death.  Oh.

We arrived at Lloyd Center and parked near Macy's.  Mom did well, but I found myself feeling concerned with her balance on the stairs into the Mall.  She did well.

She needed to price everything.  She spent large amounts of time going over the prices and discounts on all the clothes...If she had her credit card and I let her loose, she'd have bought nearly everything in the store.  Luckily I kept moving and she didn't want to lose me.

Our mission was to find new pants.  Even though Mom wears the same trousers over and over and over again, she saw no reason for us to do this.  Then, with the promise of an ice cream she broke. Mom wanted to argue with me about the size she needed.  I told her to just try them on and see how they fit - we could always get a different size.  She gave in.

waiting for the right time to try on new pants....

We found several pairs, and after a lengthy rest in a chair she went in to try them on.  None would suffice.  They were too tight, and one, which she modeled for me, she claimed was too baggy (the legs were skin-tight, but the waist was okay - a bit taught, especially around the hips and the pelvic region - ah me...).  So, we went in search of Lane Bryant.

ON the way, we encountered the food court.  Mom saw ice cream and walked to a table and sat.  "Get me a milkshake, please," she stated flatly.  So, I went and provided her with a chocolate shake with whipped cream.  She was in heaven.

the milkshake monster at Lloyd Center

Later we began looking for the location of Lane Bryant, only to discover they weren't on the store list.  Arg!  But this trip was already on the verge of 2 hours (she moves slowly that Mother o' mine), and she was chomping at the bit to return home.

Off we went to the car and then back to her place.

She had complained of not sleeping much the night before but she was alert and quite happy - more so when we returned to her room.  She pulled out a book and kissed me farewell as she prepared to read.

Overall, her attitude is wonderful.  Her speaking and thought patterns have grown worse, and her voice is growing softer.  Jean commented that at one point on Wednesday Mom Slapped her forehead and exclaimed that she couldn't think of what she was trying to say - not so much today.

She did state she had an earache, but then she remarked it could be a passing thing.  Have to keep an eye on that ear.  

The Recognition of Mom's Capgras

I mentioned in Sunday's Post that I should probably research Capgras (pronounced: Caw-Graw) Syndrome further.   Back in September 2014 I had done a little investigating on the topic, as I found it fascinating as well as alarming - should it happen with Mama.  Well, little did I realize, it has been happening for a while - though not in its complete form.

You see, according to the literature (see below) what happened Sunday on I-205 when Mom panicked and began looking around for me is an occurrence of Capgras.   That she understood when I stated I was myself this stopped the delusion.  

Other times in the past, she has referred to me in the third-person, telling me things I'd done or was doing with others.  When I would state that I was me she would acquiesce and give a little laugh of embarrassment, but I could never be sure it stuck. 

More often, of late, she has asked, "Where's Tony?" while I've been sitting and conversing with her.  While it could be unsettling to most, I find myself taking it in stride, knowing her mind isn't working quite right.  I do know others who might be insulted, but it isn't an ego-based realization; rather it's working with someone whose brain isn't functioning as once it did.  

Interestingly enough, in my research I was able to come across another phenomenon, Reduplicative Paramnesia.  This is a state in which the patient believes a place or location has been duplicated (see September's article in which Mom was convinced she'd been moved overnight).  

One friend has suggested I keep a name tag on me to help Mom remember who I am.  This won't work.  It's not that Mom looks at me and tells me about what Tony is up to, but she's also recalling her dreams in which Tony is quite active.  That I'm an interested third-party bears no water in the pool.  

This time, as I did my research, I discovered more about anxiety being one of the triggers for Capgras Syndrome.   

Did you also know that this syndrome occurs in Bipolar patients and those suffering from Schizophrenia?

Nor did I until I read it! 

Now, Capgras can also occur (though not as frequently) with Alzheimer's patients.  

Did you also know that women suffer from this 3:2 over men? and those aren't only those with dementia, but with the other conditions, as well.  Hmmmm.  

Well, I hope you learnt something more, today.  I did.  I'll still have to dig deeper.   Perhaps more brain study would help understand the how and why more - that's what I'd like to comprehend better. 

References:  

Capgras Syndrome:  The Delusion of Substitution

Capgras Syndrome in Dementia with Lewy Bodies

Capgras and Dementia:  The Imposter Syndrome

Perception, emotion and delusions: Revisiting the Capgras Delusion.  Elisabeth Pacherie  (very clinical and technical - incredibly dry, but full of interesting facts)

Reduplicative Paramnesia

Capgras Syndrome 

A Little Ray of Sunshine Goes a Long Way...or The Week Ending 02/15/2015

Blue Skies...shining on me.  Nothing but Blue Skies....

What a lovely day.  The temperatures were in the 60's, and all was well with the world.

When I popped in on Mom, she was in very good spirits.  She was mobile, able to get up and move about, and she was in a spritely mood.

She had a fear of falling over, though, as we walked to the car, but she held my hand and seemed more her old self, although only fragments shone through - good fragments.

We drove to Connie's house for lunch, and on the way she notice cherry blossoms beginning to sprout on the trees.
"Oh, look!" she exclaimed, "Those trees have flowers!"  They did, indeed.  This seemed to perk her attitude up even further.

She asked where Dad was buried and I told her.  "I wish someone would have taken me there so I would know," she replied.
"You were there, sitting right beside me when he was placed there," I remarked.  This seemed to appease her.
Next, she told me that Tony (me, but she often forgets it), Dad, my brothers, Lawrence, and Tom, were going to be going to ....
"Where?" I asked.
"You know.  Stop harassing me," even though this was the first time I'd asked...
"What about Chris (my other brother)?"
"Well, you know where he is, and until I have a car, a good acceptable car, then I'll be able to see them, too."  I let this one go.

Connie and Jean had seen Mother earlier in the week, and they had a jovial game of Scrabble, with Mom using 8-10 tiles, and forgetting about turn-taking, but as they are such great sports, this didn't spoil the game.
 Jean is so wonderful about emailing me the "doings" of the day which gives me a chuckle and an update as to Mom's condition.

We arrived at Connie"s, where we were treated to a wonderful meal of smoked salmon, a lovely veggie and fruit salad, and fresh green beans.  It was savored by all.

We had some lovely discussions about life, education, politics, history, current events, and Keurigs.    Mom didn't really understand the concept and wanted to take several home with her, rather than sample one using Connie's machine - but it all worked out, and she truly enjoyed the brew.

Mom learns about Keurig Pods

What was noticeable was Mom's difficulty following the conversation and responding in kind - rather she latched on to one word then went forward with her observations (which were non-sequiturs, but we managed to get her back on track).

She did ask, at one point, whether or not we were attentive to our grandmother.  The ladies were very helpful with the positive response I was able to grant.

Mother was full of wit, and even recited her favorite stanza from "The Psalm of Life" by Longfellow.
As we drove home, and she was in such a happy state, we had a very good conversation that felt normal, rather than those in which I must be on my toes to catch what track she's on.

Mom gets goofy!

Then, suddenly, she panicked.
"Where's Tony?" she said as she began looking all around the car.
"I'm right here," I replied, trying to keep my eye on the freeway while also attempting to figure out what was happening.
"No, not you.  He was here!"
"I'm right here.  It's just the two of us."
"Are you sure?"
"Yes.  Just relax.  It's all good."
She relaxed (Thank God!).

Could this have been Capgras syndrome rearing its head?  She does speak of me in the third person quite frequently, but never has such an incident happened before.   I must delve deeper into this phenomenon.
I left her in her room telling her I'd be right back.  She was quite agreeable, and I left her door unlocked.  After checking with the staff about her return I came back to find the door locked and no one answering.
So, it would seem she began to ready herself for a goodly nap which she richly deserved.

A very good day.

A very positive week.

Looking Back....Clues???

The other day I was walking my dogs and began to think.  Uh oooh.

It was approximately 10-12 years ago when I began noticing Mom growing a bit vague in her thinking.  Some things just weren’t adding up correctly.  Yet, in my mind, I gave it over to the aging process...whoops!

I recall bringing some videos on my visits to see Mom, some were older but she hadn’t seen them for a while, and others were newer.   She’d remark that she hadn’t seen even the older ones before and I thought it odd, but carried on, believing the viewing would refresh her memory.  It didn’t. 

Next, she began having troubles with her computer.  There was the incident where her printer wasn’t working and, luckily, before she headed out to buy a new one I came up and plugged it in - it had been introduced to the plug but wasn’t completely inserted.  We had a laugh over that one.  

There were more incidents where her computer “simply won’t work”.  So, I’d come up, as did various other people, and we’d get it running but then she’d forget.  Hence, I emailed her, mailed her, and printed out (while I was there) instructions for her.  Her issue, now, was she would put them all in the round file, as she hated clutter and thought the instructions unnecessary.  So, she called in experts and sent it into the shop.  Still, she couldn’t manage to get it to work. 

These may have seemed small at the time, but they progressed.  There was the time when she caught my house on fire.  I had taken the dogs for a walk after dinner, and brought out the cooler for her to load her food from the refrigerator (she’d been a while at the beach house and spent some days at mine on her way home.   So, we put the food from the cooler into my fridge to keep it fresh, against her objections that the cooler would suffice for 4-5 days - another clue).  When I returned 20 minutes later, flames were leaping out the kitchen window, smoke was billowing out the front door, and she was standing in the hallway with a bowl of water saying, “I’m so sorry!”  Fortunately, I was able to extinguish the fire with baking soda, but the cooler had melted all over the stove, the counters, the floor, and the sink was melted.  Smoke damage was throughout the house, but there was no structural damage.  

What she’d done was put the cooler on the stove as it seemed to have more space to open the top.  Inadvertently, she’d turned one of the knobs through  a bump or something while filling it.  Then she left it there to go into the living room to do a crossword.  It wasn’t until the smoke was filling the air and the detector had gone off that she realized something was amiss. 

After, she denied the incident to me, telling me it had been my negligence for turning on the stove to get it ready to make tea for when I came home.  Wha----?????

There were also times when she began to create stories about people - stories that weren’t true, but she believed them to be so. This was evidence of the hallucinatory state, coming from her dreams.  Soon, these stories carried much weight, and they became the norm - with more embellishment even though none held any merit to those in the know.

Then, eventually, came the realization of her not cleaning the house, the dishes, etc., but her house still seemed to be managed, even if the dust collected more and more.

Of course, this all grew to a head when her confusion increased to a point it could no longer be unchallenged. 

But it began with little things that one normally tosses aside as “just one of those days”.   

It does make one ponder a little more when little things begin to occur….

Beginning to Investigate The Sudden Increase In Decline in LBD with Mom

When I first thought about this post, I was trying to figure out why Mother’s decline has been so rapid recently.  

Her tremoring is more pronounced, her confusion is greater, her speech is growing muffled, and compared with 6 months past,  she is a very different person, with signs still signaling who she actually is.

I decided to perform an amateur’s search for some clues as to what might be happening.  

At first, I found evidence that the Neuroleptic drugs may be the cause of the enhanced decline.  There are several studies out there that state they can accelerate this in dementia; yet, there are also studies which demonstrate that the decline in LBD patients is much rapider than those with AD.  

Let’s look first at Why Neuroleptics for Patients with Lewy Body Dementia?

To be honest, Mom’s condition necessitates the use of Quetiapine or Seroquel, in order to stave off anxiety and the presence of hallucinations.  While it has calmed her, her hallucinations have begun to grow in number, they all seem to be quite benign and not the frightening events that occurred previous to her hospitalization.   So, as with most patients with LBD, there is a need for these.

There are sensitivities that are created by these drugs, and LBD patients do lend themselves to be at risk for the various side effects.

What are the Side Effects?

The side effects of the drug have also caused her to gain weight, and to up the dosage, as the neurologist put it, would only allow her to “blossom” more;  this would provide a greater worry for her physical health, which seems to be teetering in another balance waiting for disaster.  

This provides another situation with the side effects of the drug.  According to US News and World Report Health, the use of the neuroleptics has been rather poorly studied in the past and newer examinations undergone have realized there is increased risk of heart attack or other related hazards.  

Of course, this is also listed as a jeopardy when used; we were informed of this when we first consented to Mom’s being given it.  Quetiapine is listed as a “black box” drug.   According to Drugwatch.com, black box drugs are those which come with a strong warning of the possibility of death.  

Can Neuroleptics Cause An Increased Rate in Dementia Decline?

According to a National Institute of Health Study, Neuroleptics Do increase cognitive decline in patients with dementia.  However!  with Lewy Body Dementia Patients this is not so.  Cortical forms of dementia, such as LBD are not affected in such a manner by these drugs, whereas those with Alzheimer’s may run such a risk.  

There are also studies which indicate the decline of those with LBD is much greater than those with AD.  But that’s another topic for another day….

Sources:

Rupert McShane, Janet Keene, Kathy Gedling, Christopher Fairburn, Robin Jacoby, Tony Hope. Do neuroleptic drugs hasten cognitive decline in dementia? Prospective study with necropsy follow up. BMJ VOLUME 314 25 JANUARY 1997.

FDA Black Box Warnings: Posted January 18th, 2012 by Staff Writer.

Antipsychotic Drugs Might Raise Heart Attack Risk: Study.  HealthDayMarch 28, 2012 | 4:00 p.m. EDT.  US News Health.

Down the Rabbit Hole ... Or - The Week Ending 02/08/2015

What a busy week for Mom!

She had the doctor's appointment on Monday.

Next, the RLS (Connie & Jean) came to play Scrabble and to visit.

Mom played quite well, even though she liked keeping 8-10 tiles at a time (by this time, the ladies realize there's just no following THAT rule!)

The rest of the week went relatively well for her.  She played Bingo and did what normally happens during the day in her cottage at St. Anthony's.

Tonight, though, brought the reality of the situation closer to home.

When my brother went to pick her up, Mom was fully dressed!  for bed!  and was in bed....So, she arose and dressed quickly (for her).  It took only 45 minutes from his arrival to their departure.  I'm jealous; usually it takes her much longer when I'm around.

Before I arrived at dinner, she talked about her earlier (in the day) conversation with her mother, among other subjects.

When I arrived, she asked if I was living with my brother (who lives on Vashon Island, Washington).  I asked her why she would make such an assumption.  Her reply was that she saw me enter his house.  Now, I'm not sure if she's stalking me in her visions, or ....

She is still having troubles with her leg, this time complaining of pain down her right quadracep.  So, I gave her a Vicodin, which she took, quickly, and then I realized she had already consumed at least 2 glasses of wine.  Oh well...She's not driving.

Her thoughts and opinions were nearly all non-sequiturs.    I had no idea our grandmother was Norwegian.  Yet, she told us she was.  I asked, "She was Norwegian?"  "No, she wasn't.  Where did you get that idea?"
I asked her about her week, and she told me she did the usual things.  I asked if she went with her Klahanie group (the hiking group for the Olympics from Sequim and Port Angeles).  She stated that she did some things with them this week, and with her book groups, as well.

She also asked where her friend, Nadya (from Port Angeles) had gone.  This was clearly a hallucination, but I told her she needed to leave to get back home to her family.  Mom found this acceptable.
On the way home, she told me her grandmother, on her mother's side, was Italian, but then realized she would do much better with the family if she were French, so she converted.  I questioned this, and she looked at me as though I was crazy!  "You can't just convert like that.  She stayed Italian!"  The things I learn about my heritage (but none is true).

She was quite tired, as well, and her speech began to lag and become muffled and difficult (I would, at first, blame the wine and Vicodin, but having seen this earlier in the week I knew it was just the progression of the disease).

Although she stated quite clearly that she was not hungry, she came out and devoured most of her meal.  And there was no ice cream this evening.

She had such a delightful time (It was truly a wonderful meal) dining, watching Shirley Temple, and conversing, she didn't want to leave.  Finally, my brother and his wife convinced her they had things to discuss and wanted to get to bed, but couldn't if she was there.  She saw no issue with her presence during their discussion, but finally we were able to get her to venture out to the car.

At St. A's, squared away into her room, she sat in her chair, and I kissed her on the head.  "I love you," she said with a faint smile.  "I love you, too," I remarked as I left.

I will assume that, perhaps, within the next few months the dinners may not be feasible for her as the disease progresses.  My brother expressed his concerns over this, but only time will tell.  Maybe she'll show us!

A Trip To the Doctor Confirms Our Suspicions....but not the ones we'd hoped

So, Mom went to the doctor's to find out what was up with all the pain in her pelvic region and her leg.

When I came to fetch her, she was pretty much ready-to-go!  She had one of her diet Pepsi's, and one of the travel magazines I'd brought her the day before.  She very much enjoys magazines with lots of pictures.

We went to her room where I looked for the letter I had brought her the day before.  But, instead, I found several wonderful birthday cards for her!  How well-thought of she is by her friends and family!

Later, a bouquet of tulips arrived from her brother, Peter, in Reno.

When she asked why we were going to the doctors, I told her it was for the pain in her pelvis and leg.  She poo-pooed the thought but came along, anyhow.  How gracious!

While in her room, she put her Pepsi back in the refrigerator, and then stated she wanted to see if there was any more bourbon.  Yes, you heard that correctly...but, obviously, there was none.

I did venture in to pick up the papers on her medications from the med-aid, Cathya, and I also asked her if she could check on the size of Mom's pants.  I plan on just going and buying her some, but in a slightly larger size, as Mom is a bit too fragile to go shopping at the mall.

So, off we went to the doctor's office.

We arrived in good time, and Mom went to work reading about IRA's!  She wanted to know what a couple of the terms meant, but we were interrupted before I could respond.

To be honest, Mom is having difficulty forming words, and making sense out of what she's trying to say.  This was apparent yesterday, but today it's much worse. 

Her blood pressure was taken, and Mom told the nurse that she didn't want to have any more flesh cut from her leg, showing her injured leg from 1978 (this was a hiking accident at Silver Creek Falls, where she fell, and gashed her leg open; it took 2 surgeries and some rehab to get her leg back on track so she could not only keep it, but live).    I reminded Mom it had happened nearly 38 years ago, and she gave me the dreaded 'Keep your mouth shut, or I'll shut it for you!' look.  Oh well....

The doctor came in and we explained the problem.  She asked if there was a urine sample (to check for UTI), but there was none.  So, she asked Mom if she would be willing to produce one.  A rather terse and emphatic "No" answered that.

So, I left the room while she examined Mom.  I could hear Mom groaning in pain, but mostly it seemed rather casual (I was not eavesdropping, I was a few feet away from the door, checking my email!).  When I re-entered, there was a serving set of silverware on the examination table, which had come from Mom's pocket.  Was that the problem?  No.

It seems that Mom has an arthritic hip from her fall several years ago at home.  The pain radiates up and down her right side, and the silverware doesn't help, either.

The doctor tried to encourage Mom to go back to massage, but Mom was adamant that she wouldn't.   Mom then proceeded to explain something but couldn't muster the words, nor the thought.  I looked at the doctor.  She nodded.
"She seems to have severely declined in the past few weeks," I said.
"She has really taken a sharp turn since I last saw her," she replied.  "We'll see you again in April or May."

So, off we went off, her tremoring and shuffling (her tremors are becoming more pronounced of late), but her gait was swifter.    I had placed the silverware into her purse, and she had pinched the magazine, as she was sure she had brought it herself. <sigh>

On the way home, she kept pointing at the water.  She was seeing the clouds as water, insofar as I was able to make out.
We arrived back to St. A's, and I was able to jot down her pants' size.
She went to the bathroom, and when she came out she seemed uninterested in dinner (which had already been served), but they were holding it for her, as they know her habits by now.
So, it would seem that we are on a downhill slide, but keeping hopes up that there is still a semblance of the woman  who resides somewhere inside.

The Week Ending 02/01/2015

A birthday rose for Mom from Nadya

What a week.
What a year!

Last year at this time, looking back, Mom was able to arise in time for Mass.  This meant early Saturday nights for me, and early Sunday mornings to deal with everything that needed be done before fetching her.

Now, not so much.

Mom is sleeping in later.  She tended to be quite the early riser (but, too, she did tend to sleep in before at her house, and this increased...) unless she'd spent the evening playing FreeCell into the wee hours (sometimes until 5 am!).

She dallies in her eating.

She is hoarding cups and placing them in her refrigerator and cupboards.   Last year she kept certain mugs in her cupboard, and this was fine.

Watch your silverware - she may believe you are a source at replacing what she's misplaced, or what's been returned to the kitchen at St. A's.  This is still the same as last year...Whatever is causing her to believe she has the need is far beyond my comprehension.

Do Not Plan on Carrying On a Conversation with her - it might last a few moments, then ricochet in a new direction every few sentences or words.   Last year we could easily distract her from her train of thought, but now it's easier, as most trains derail much quicker, only to be replaced  by new ones.

She may latch on to a phrase you've used and that will become her strand for chat, even though it has nothing whatsoever to do with the topic you've been talking about.  And, then, there is her fallback of reciting her favorite poem (Longfellow's "A Psalm of Life").  

Today, though, Mom complained of being woken at a very early hour - 9:30 am!  She stated that she had breakfast in her bedroom with some of the other ladies in her cottage (no, that's quite far from the truth).

She was whisked away, being that she was all ready to fly, soon after my arrival.  She was given some meds, took the regular pills, then attempted to stuff her vitamin C gummis into her pocket.  I told her that would only create a mess, so she put them in her glasses case, where she kept a table knife, glasses, and a very not-so-good-looking tissue.  What was I to do....

We departed, and she was in good spirits.  I reminded her of our doctor's appointment tomorrow, and she wanted to know:
1)  Which doctor;
2) The purpose.

I explained that she would see her regular physician for the pain she was experiencing on her right side, and also in her pelvic region.  She agreed about the latter pain, but stated, quite adamantly, the other pain didn't appear very often, and was more a bother.  We'll see.

WE walked to the car, and she shuffled.  Upon entering the car, she began to complain of the pain on her right side (she explained that she was missing some ribs, but wasn't sure how they were extracted), and her leg (again).

We arrived at Jean's, where she and Connie were awaiting us.

Connie, Jean, and Mom..Their Chapter of the RLC

What a delightful conversation those three had!  I made lunch, and they discussed books, politics, and family.  There had been a funeral on Friday for someone known by both  Connie and Jean's families, but Mom and I were both unfamiliar with them.  It was an interesting conversation, nonetheless.

While Mom was seemingly together, not all she imparted made sense.
I showed her the photos that Nadya had sent via email, and she stated that she had never been to Orcas Island.  I also showed her the snap of the birthday rose.  Mom then remarked that Nadya's birthday was nowhere near Orcas Island.  There we go.  A perfect example of her thinking!

Mom and Nadya on Orcas Island several years ago

Later, I took Mom home.  She actually ready after 40 minutes of the visit!  But we had yet to sup.  After she ate her ice cream and caramel sauce, and took her meds with it, we were off.

She was weary but content.  She was left to read a couple of new magazines I brought her, and a letter from her dear friend, Addy.  The letter was quite a treat!

Tomorrow comes the doctor's visit...WE shall see what we can discover.