Lewy Body Hallucinations - A Common Occurance for Many

Many months ago, I wrote about the differences between Delusions and Hallucinations.   Today, I’d like to review the topic of Hallucinations, once again, if I might.  

What is a Hallucination? A Hallucination is seeing something that no one else experiences - even smells.  It could be anything that appears real to the person experiencing the phenomenon, but has no bearing in actual reality to anyone else.    If a person were to see bugs or ants crawling up their arms and smothering them, and began to scream - this is because it’s a real sensation and visual to them - but to those around them (hopefully medical staff) it is something that is induced by drugs or some other compound that has entered into the person’s brain/psyche.

So it is with LBD.  

When Mom called me and was very upset, probably about 2 years ago, she told me she was in the living room trying to be safe while all these people came into the house.  She was crying in desperation.  She told me they were taking things and laughing at her.  She was horrified and mortified.  I asked her to hold the phone up so I could hear them (something seemed amiss about this happening), but there was nothing there.  She was upset that I remained so calm.    You see, for her the experience was quite real as it “occurred”.  For me, though, it was an event that was inexplicable  and made no sense.  

Now, Mom was in the diagnostic stage of LBD; I say this because we really hadn’t a clue as to what was going on - we just knew she was a great deal dottier than we’d ever seen her.  This was causing great concern.  According to Lewy Body Dementia via Helpguide.com, these may occur in the later stage of AD, while with LBD they can occur in the early, mid, and later stages of the malady.

One man who is caring for his wife, suffering from LBD, talks about how his wife is always seeing cats.  She sees them in the corner, next to her, in her lap - just about everywhere.  He explains that he needs to be quite careful not to step on them, so he watches his wife’s eyes carefully.  He has found this to be a very charming hallucination and they are able to enjoy it - although he hasn’t the ability to actually experience them as she does.  

But what causes these hallucinations?  Good question.  It took some digging, but I believe I was able to find something that imitates a good response.  According to the article, Parkinsonsim and Related Disorders (Rabey, Josè Martin. "Hallucinations and psychosis in Parkinson's disease." Parkinsonism & related disorders 15 (2009): S105-S110.) there is a defect in the production of dopamine on the brain, which enables the brain to begin produce psychotic effects that are more coping than helping.  

While Seroquel (Quetiapine) has truly helped Mom, it is truly something that needs to be monitored closely (she is on a relatively low dosage).  Mom hasn’t had any hallucinations for quite some time, now, and is happily dispensing stories based on delusions, instead.  Yes, Delusions.  Remember, there is a rather big difference between the two.

Okay, so back to hallucinations - LBD patients, and Parkinson’s patients aren’t the only ones to suffer from such a symptom.  No, remember I mentioned above that AD patients suffer in the later stages from this affliction.  Perhaps it takes longer for the tau proteins and beta amyloid plaques to affect the brain (as they do work so differently from the Lewy bodies), that they reach that part of the brain much later.  

Anyhow, that’s all I have to share for today.  I hope it has given you a little more information, or at least bitten you to do a tad more research yourself.  

Below is a video posted by a daughter who is showing her father having both hallucinations and delusions.  To be honest, this is a bit (not completely) what it is like with Mom.  It may seem sad, but it gives a great deal more illustration and reality to the phenomenon.  In fact, this poor man has less mobility than Mom - it's the conversation that is quite similar (although Mom is a bit easier to understand, as well).

Three of the Most Common Mental Issues with Lewy Body Dementia Patients

People still believe that Lewy Body Dementia (LBD or DLB) is just another label for Alzheimer's Dementia (AD).  It's not.  While they may have many traits in common, AD is on the far end of the spectrum of the dementias while LBD tends to hover between the two ends (Parkinson's Disease Dementia - PDD - is on the other end).  There are cross-overs, where someone with AD might present some traits, but the LBD patient tends to have specific symptoms not found with AD.

The following mental issues are those typically found with LBD patients, and sometimes with AD, or other forms of dementia not discussed:

1)  Hallucinations.
      Seeing something that doesn't really exist.  For example, bugs, animals, children, robbers, family members, or even events that aren't truly occurring.  There may be the hallucination of smells or tastes that exist only for the one singular person.
      I've been told by others who are caretakers for LBD patients (spouses, parents, siblings) that cats, mice, birds, and other animals magically appear only to their loved ones; these are so real the patients pet them or even chase them around (if possible).   While we've seen nothing such as this we did deal with the robbing, hostage taking, and kidnapping of Mom before she was hospitalized (spoken of in earlier posts).

2)  Delusions.
      This is different from Hallucinations in that this is believing something that isn't true - Capgras Syndrome is a form of a delusion, believing your spouse is cheating on you (Othello Complex), people are stealing your things, people are abusing you, you've won the lottery, people have been visiting you who couldn't possibly (due to death, distance, time, or many other reasons).
     Mom does believe people steal from her, that her clothes are not hers, that her mother comes to visit with her and they work on various tasks, that family members come and nap with her, and that I sleep in the same bed as she and go out in the morning to return at night.
   

3)  Obsessions/Compulsions.
      Compulsive preoccupation with things beyond reason, or doing activities over and over, often anxiously - needing to clean, sort repeatedly, hoarding, eating/drinking uncontrollably.
      While some of this may have been Mom before hospitalization, she does hoard silverware (just look in her purses, drawers, boxes full of things she picks up and fills with whatever.  There was even the time she tried to take the silverware from the restaurant table and stuff it in her purse - averted, but still...


While these may seem alarming at the time, there really is no reason to react dramatically or harshly.  A smile, question, and distraction seem to work very well.    There is no reason to argue or attempt to "snap them out of it!"  This would lead only to frustration, resentment, and hard feelings - in other words a battle that need not be fought.  Agreeing or having them tell you more makes more sense.

 Remember, for them, this is their reality even though it may not be yours.  You've no idea what's going to come next, nor do they.  For Mom, her reality can be quite surrealistic and this took some time and thought to realize, although it was right under my nose.

There are medications that can help with these symptoms, all with their own side effects.  Be sure to research them after speaking with your doctor or neurologist.  

Dad's What? or The Week Ending 03/29/2015

A rather tame week.

Mom is becoming rather stubborn about some things.  Such as:
1)  Taking showers - she keeps stating she took one the day before.  They had been able to get her to take them under my orders (she was accepting that as an order), but that has seemed to cease - no evidence of bathing this week.  Not sure what to do.

2)  Laundry - She refuses to allow them to take her laundry.  She tells the staff that she'll do it herself if they'd allow her to use her washer/dryer downstairs (this is going back to her former house - there is no basement at St. A's - at lease not one she'd be able to access).  I checked her hamper today, it's mostly undergarments.  The staff went through her clothing and put in the wash those things that were in need.

3)  Cleaning her room - She refuses them access to clean it.  So, when she's not looking they rush in and do what they can before she can catch them.  Wednesday she went to Mass, so that presented a wonderful chance while she was in the reception area, outside of the cottage.

On Wednesday, too, Jean came for a 2+-hour visit.  Mom showed her the box of clothes that she wants to donate; Jean contacted me and asked me to go through it first, as it's not something she is trusting is what Mom says.     Jean was also generous enough to bring chocolate mini's and some soda for Mom.   I'm hoping that the surge of sugars will bring about a good change in her, as I figured she really wanted those items and at this point she should be happy - not cantankerous and miserable.

They spoke of many things, but not shoes, ships, sealing wax, cabbages, and kings, but the things RLC members prefer to speak of - family.  Mom spoke of her paternal uncles, and also spoke of Dad's brother, Bob.  When Jean asked her about my Aunt Mary, Mom told her she wasn't real family but married in (she's really my father's sister who, sadly, we've not heard anything about in nearly 20 years).

Today I came in and took her mail out of the refrigerator.  Mom says I put it there, but I honestly can't recall doing such a thing.  Hmmmm.

I went through the box of donations and found several pairs of pants that used to fit Mom - but no longer.  And she refuses to try on the new ones.  Doggone it - pretty soon she'll be left with ... never mind.  Also in the box were some dirty underwear, which was pitched into the hamper;  next came some mismatched socks, a very nice nightie (she says she doesn't wear those anymore - they're not warm enough), several undershirts, some nice shirts she's outgrown, and a sweatshirt she wore last month - she kept that one.

We hied over to Jean's house for pizza and berry pie a la mode.  Beautiful warm day  and very good conversation.   And, of course, we spoke of Jean's family.

After a little under an hour, Mom wanted to get going.  Then came the pie and ice cream.  Hooked her!

Two hours in we left.  That seems to be Mom's limit.  So, we went to the store to pick up some things for her - lipstick, eyebrow pencil, and oranges.  Before we left, she stated that she really had no need to use the "facilities", yet as we arrived at the store she demanded we move quickly so she could.  The janitor said she'd need to wait, and I told him he'd have more than enough to clean if he didn't let her in right then - problem solved.

She later kept asking if we were going to Timmy's house.  I kept asking her who Timmy was.  Finally, it was realized she was speaking of Jean's son, and not my nephew, Mom's grandson.

After we left the store she asked if Dad and his lady-friend were coming over.  Huh?  "What did you say?  Dad's what?"
"You know, his lady friend."
"What lady friend?  Dad doesn't have a lady friend.  What makes you think he does?"
"Well, you know, the woman who was in the checkout with us with your father."
"Oh," I lied.  "No, that was just some woman, not a strumpet."
"You really shouldn't call people names like that.  Besides, she's a very nice person."
"What do you mean by lady friend, anyway?"
"You know, a woman who is his friend."
"Just a friend?"
"Yes.  Get your filthy mind out of the gutter!  I'm going to tell your father!"

Well, to  be honest, that was all a relief.  Also knowing they wouldn't be visiting soon.  The only woman in the line with us was the checker who appeared to have left most of her better days of glory in storage years ago.

So, I had brought in more soda and more chocolates, thanks to Jean.  Mom has a box of Chips Ahoy! in her dresser so she's pretty well taken care of.    I suspect this week will bring more news - perhaps that of good hygiene!

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!

What Causes the Hallucinations in Lewy Body Dementia?

Ten years ago....Who'd a thunk!

Wow.

Looking at the past posts, and talking to many people, I wasn't sure about what I could write about that wouldn't be slightly redundant...

But then, sometimes we could all use a quick refresher, yeah?!

Then it hit me - What are the Big Issues faced by LBD Patients?

I performed some searches, and realized it tended to be an arbitrary sort of topic.

For most sites, though, there was a tendency to highlight the Hallucinations and Delusions.

There was also the Medication Sensitivity.

I'd like to go with the Hallucinations and Delusions - it sounds more entertaining, and it tends to be quite broad, in many ways.

If you recall, from earlier posts, I discussed Mom having illusions of being kidnapped, held hostage, walking with her mother, and other assorted imaginings.

Well, with Lewy Body Dementia, this is normal.

In our support group, the other day, someone else began talking about how their spouse was seeing people coming into the house and taking things; Mom had the same delusion - and yet, nothing was missing, and there was no evidence of anyone but her being in the house.

Others in the group agreed - their loved ones had had much the same sort of hallucinations.  I'm sure many felt a sense of relief, and others may have had a tinge of anger, wanting to believe their loved one had the better hallucination (I was one of the latter).  But there we were.

I also discovered that Mom's inability to differentiate dreams from reality was also normal.

Then there were those whose afflicted ones had actual hallucinations that there were animals, or people elsewhere in the home.

So, what is causing these?

According to Brain: A Journal of Neurology.  Oxford University Press. (2/1/2002, p 391-403):

 there was a striking association between the distribution of temporal lobe LB and well‐formed visual hallucinations. Cases with well‐formed visual hallucinations had high densities of LB in the amygdala and parahippocampus, with early hallucinations relating to higher densities in parahippocampal and inferior temporal cortices. These temporal regions have previously been associated with visual hallucinations in other disorders. Thus, our results suggest that the distribution of temporal lobe LB is more related to the presence and duration of visual hallucinations in cases with LB than to the presence, severity or duration of dementia.

Good Golly!  All these technical words!  But what does it all mean?

What it means is that the outer part of the temporal lobe and the outer region of the hippocampus (which lies just beneath the temporal lobe) are covered with the Lewy Bodies.  These are slowly engulfing and destroying these sections of the cerebral cortex, as they move into other regions of the brain.  (See Image Below)

Therefore, the hallucinations make sense.  As the bodies move around the brain, they will eventually take over more of it, eventually making it to the other regions of the brain.  This has, admittedly, already begun, as we've noted with her memory, movement problems, stiffening of the right side, and lack of sensory abilities.

It's a sad tale, but it's also interesting from a clinical perspective.  I've learnt more about the brain and it's functions than I probably would have otherwise.  I guess Mom's still teaching me.

Visit These Sites for More Information:

Visual hallucinations in Lewy body disease relate to Lewy bodies in the temporal lobe

What is the Parahippocampal Gyrus?

What causes visual hallucinations in dementia with Lewy bodies?

Lewy body dementia Mayo Clinic

Lewy Body Dementia and HelpGuide

The Days of Wine and Roses Ice Cream...or The Week Ending 1/18/2015

What a week.

Let's see...Hmmmmm....where to begin.

Well, The RLC, (Connie and Jean) went to pay a visit to Mum's on Wednesday.  This was a very good day. Mom had quite a time playing many tiles but formed good enough words to win, with Connie and Jean coming in close second and third!

That same day, I received a call (whilst they were visiting) informing me that our dear, sweet, sweet, charming, mother had been "stomping (so something of the sort)" on another resident's foot.  My My My....
It was thought, perhaps, the other resident was too much in Mother Dearest's space, and this was Mom's way of dealing with it.  I stated we needed to look at it as though we were dealing with 4 year olds, and I heard agreement.  That's sad, but it's where we are.... there may be an investigation...uh oh.

This morning, I found Mother resting comfortably in her recliner drinking something clear from her glass.  I assumed it was just water, or some juice.

Yes.  Juice.

No.

It was wine.

She'd been sipping at it for the past 30 minutes, or so, after breakfast.  She thought it pretty good she could have it.  I thought it a bit too early, but then, she thinks it's June.

I asked her about the week, and she told me that last night and this morning, they brought all the residents together on the "other side" for some sort of ritual.  She couldn't quite state what that meant, and when pressed, she began telling me about the visit from her cousin.

Yes, Alice, her cousin, had apparently been visiting her.  They had a good visit, but then they both decided they wanted to take a bath at the same time.  Alice beat Mom into the bathroom, so Mom just decided there wouldn't be enough hot water once Alice had finished.  After, Mom said Alice left and went home to her family.

Mom also told me that a nice young couple had come along and took her to their house.  It was a nice house, but she really couldn't recall much about it, and then they brought her back in time for breakfast.

How wonderful she was so busy these past hours!

But it didn't happen.

She also told me she had her choice of bourbon or wine, and that one of the attendants was quite generous and gave it to her whenever she asked!

That's partly true - for dinner, and the wine.  The rest is from the other side of the looking glass.....

Mom is proud of the flowers on her sill.  She named the bamboo "The Soldier" flower, because it is taller and more upright than the others (it's also the only one that's alive - the others are silk).  But they are vividly colored, and make her quite happy; that's important.

She still has tons of soda, which she thought we should tak e to Jean's house, as Mom plans on moving before tomorrow.  She also has tons of oranges, chocolate bars with almonds, and  - oh oh!  Black Bananas!

Where did those come from?

We bought them a week ago, I believe, as she stated she wanted them on her cereal (I figured, she could peel them and eat them, otherwise).  She just left them on the counter to ripen and rot.  Ugh!

I took them up, and she said, "Don't you want to keep them for your cereal?"
"Mom, they're black.  They're no good anymore."
"Well, why don't you just mail them?"
"Mail them?  Why would I mail them, and to whom?"
"I meant Nail them."
"Nail Them?
"No, Mail Them.  To show they're still good!"
I tossed them in the kitchen debris.
Mom was enjoying that wine!

We finally left for Jean's house.
We had a good lunch, and Mom seemed pretty much in sync - but her thoughts didn't match; she sort of knew what was going on, but her thoughts belied that she was thinking something else.  We all played along.

Mom couldn't finish her tuna pita, nor her soup, but she certainly had no issues with chowing down on a bowl of ice cream!  Never fails!

Soon, though, she actually did seem as though she was quite present.  It was Mom from a couple of months ago!  Nice!

Terry came by and we all had a wonderful visit.

Soon, though, it was time to go.

Mom had complained of pain in her leg, but finally acknowledged to me that it was shooting down from her pelvis.  I reported this, and so they're going to look into a possible UTI screening for her.  I hope it's simple and quickly dealth with!

So, aside from some interesting goings on that were actually dreams, and from her having quite the rosy day beginning with spirits that helped make her a little higher than normal, Mom had a pretty good week/day.

She had no clue what I was saying about the "foot stomping", and told me I was full of bologna, so I let it slide.

On an upper note, though, she does want to go pants shopping!  We'll have to wait until the 28th when we visit Dr. Brad at the Dentist's Office, for that adventure, though! 

An Odd End to the Week Ending 12/21/2014

Sometimes it's best to just let your thoughts fly freely through the atmosphere.  Most times, though, as we're all somewhat used to, it's good to have them in a container where they're accessible to any and all.

Today's thoughts few freely - truly - and it was quite an interesting ride!

I arrived to take Mom to Mass around 930 this morning, as she's usually up and about waiting.  But, this morning I found her in her room, sitting down doing whatever she was doing.

I had brought her some goodies:  Mount Rainiers, Toffee Bars, and Rich Bars, which she used to make for Christmas time each year.  She told me to put them in the refrigerator.   I also brought her some cards from people she knew in Port Angeles, which arrived at my doorstep.

She eagerly opened them, and showed me.    Then she stuffed them back into their envelopes and she put them on her dresser.

Next, we needed to put on her stockings.  Where were they?  She told me they had been stolen, along with her slippers and shoes.  Hmmmmmm.  Where could she have put them.  Under the bed? no.  Under her pillows?  no.  In her closet under a stack of blankets?  Aha!  a slipper to match the other.  She still wasn't satisfied.

I then opened the cabinets under the sink.  No.  The drawer under the fridge?  Aha!  The shoes and the stockings.   She told me someone was playing tricks on her.  Oh well.

While I had her putting on her shoes, which she found to be a sign that Satan had possessed me, I ventured out and spoke to the med-aid about getting her medications for our outing.  Here I discovered that she had just only risen from bed.  She had been complaining of nausea and pains.  Funny.  She hadn't said anything to me.  Oh well.

So, there we were, me thinking we were on our way out - how silly!  We just got her ready to eat her breakfast!  So, I settled for a cup of coffee and helped her read the paper.  Next, she worked on two crosswords from the same paper.  Time moved on but we did not.  There was no moving her.

Finally, it was past time to arrive at Jean's for lunch.  So, we set off for that part of Portland, driving merrily through the streets, detouring around Lloyd Center and venturing through other neighborhoods.

We finally arrived to a warm greeting.  Jean had also purchased a padded folding chair for use when the RLC came to visit Mom in her room!

Jean's daugher, Jenny, and son-in-law, Aldo, were also present.  I'd brought Jean treats, as well.
One of the goals, today, was to have Mom write Christmas Cards to her friends in Port Angeles.  Jean mentioned Nancy, but Mom said she had died.  Jean showed her a card she'd just received from Nancy, but Mom pooh-pooh'ed it.  So, I dialed my phone.

Nancy answered, and I handed the phone to Mom, who thought it in bad taste to call the dead.
"Is this you? or a recording you made?" Mom asked.
"It's really me, Norma," came the response.
Mom had a few more probing questions to ensure Nancy really wasn't speaking from the tomb.  Eventually they were happily chatting away - about what, I couldn't tell you, except that not all Mom said made any sense -- quite a few non-sequitors, a few things that fell from the sky and became the topic, etc.  But it also demonstrated how strong her hallucinations and delusions can be.  Of course, I'm not telling you everything, because that would be too much.

Finally, they ended the chat.
"It was so good of her to call from so far away!" said Mom.  "That was a great act of charity!"

I didn't touch that.

So, the conversations were off.  Mom and Jean talked about family, and Mom asking Jenny all sorts of questions about her family, forgetting, of course, that Jean is her mother.

She even asked me some questions that related to me as her own brother, inquiring as to whether or not I'd visited my brother in Japan while he was teaching there and in the seminary.  Trying to help her identify me was somewhat confusing for her - but in a minute she would know me, and think I was talking nonsense.  <sigh>

She wrote some cards, after lunch, and we departed.

On the way home, Mom asked me, "If you were married, and owned your own home, would you rather be married or single?"
I wasn't sure she realized the question so I parroted it back to her.
"That's right," she said.  "Which?"
"Well, let's try putting it this way - I'd rather be single than marry the wrong person."
"That's a very wise response," she stated.
Whew!

So, we got back home, and she was still going on about the phone call with Nancy.  Will she remember tomorrow?  Will she recall any of today?  That's a tough call.

Yes, she did ask about Dad and his doings recently, and of her parents.  Luckily I can figure out what to say quickly, and she accepts it.

So, a promise to take her to Mass on Wednesday evening brought a weary smile to her face, as she began to wind down for a nap.

I've a feeling this is the beginning of a whole new stage.

Phases of Lewy Body Dementia - According to a Very Knowledgeable Source....Me.

Doing much research on LBD and trying to figure out what lies ahead for our dear Mama has been eye-opening, but also a little frustrating.

You see, there is nothing definitive about the disease that really lets anyone know what to expect next.

At a recent support group someone mentioned that there was a doctor who had defined 'phases' of LBD.  I can't seem to locate anything remotely connected with this topic, so I've had to try to figure this out on my own.  Rats!  It's so much easier when there's someone who's already done the work....

So, here goes what I understand and what seems to fall into place with this disease:

PHASE ONE (According to me):

       Confusion, Mild Hallucinations, and Lapses of Memory.

    These can be seen as benign signs of the aging process.  Who doesn't have a story about their parent or loved one who gets 'dingy' at one point or another.  Yes, we all have those moments, but with the Dementia Patient, these seem to happen a bit too frequently and, many times, are forgotten (this could be seen as trying to forget the embarrassment).

      Mom took a nap one afternoon and slept rather well.  When she awoke she looked at the clock and outside.  It was mildly dusky but she mistook it for dawn.  She dressed herself quickly, ate some cereal and hopped into her car.  She believed she was late in picking up a friend, in the next town over, for a hiking expedition with their group.  She saw the darkness falling, but thought they might be rain clouds, so didn't give it much thought.  When she arrived at the friend's home she knocked.  Her friend answered the door and said, "Norma!  What are you doing here?"    Mom replied, "I'm here to pick you up for the hike."    Friend stated, "That's tomorrow morning.  It's 9:00 at night!"Mom, though embarrassed, excused herself laughing.  She drove home and tried to get her thoughts together.  She did call me and told me about it the next day, but was afraid someone might think she was losing her mind.  

There was also the concerned call of her best friend, as Mom had her mail all over the dining room table - which was terribly strange.  Mom opened her mail there, then tossed the odd parts out, and dealt with the meat of the mail at her desk.  But this was a jumble.  Mom had also phoned to tell me she was having issues and couldn't figure out why her mail was piling up.  This was definitely a sign. 

Hallucinations also camouflaged as confusion exists, as well.  It may seem a bit odd, and it truly is.  As Mom couldn't recall which house we were dining in one day (we were at her home in Port Angeles), and thought we were in her old home in Portland, and then in mine.  She laughed when I corrected her and she tried to cover it up.

PHASE TWO (According To Me):

   Heavier and less benign Hallucinations and Confusion. 

        Mom began calling in the mornings and during the day asking for Dad's phone number and for that of my grandmother's (her mom).  I recall one evening when she broke down sobbing because she was having an awful time reconciling herself to her mother's death.    This went on for some time, and she was phoning my brother just as often.   

She would also phone me several times with the same message.  Then I'd return the call and she'd tell me again.  

She also phoned one brother 13 times in 2 days, but never left a message, and, I believe, spoke to him at least once.  I spoke to her about this and she stopped.  

Then there was the call about my grandmother wandering off.  Mom wanted to phone the police, but I explained to her they would take her away, as her mother had died, and wasn't truly with her, but in spirit.  She seemed to calm down.

The next days she called to say she'd been kidnapped, but had escaped and was hiding out; she was being held hostage in a home not her own; she'd been moved to Portland overnight - and then back again; She had driven to Astoria in a little more than 15 minutes (now, she was a fast driver, but making that 3.5 - 4.5 hour drive in 15 minutes?  Blimey!).  The list continues.  

PHASE THREE  (According to Me):  

    Physical Rigidity and Symptoms of Parkinson's-like tremors, etc.

   Now, these can happen at any time during the course of the disease.  Some patients develop these earlier than others.  I believe that the Physical Therapy and Massage have helped stave these off for the time being, but Mom just let her Massage Therapist go, so it's a matter of time.  

    Mom has complained of stiffness on her right side, and I've seen her hands begin to tremor without warning.  She shuffles her feet, and with more walking this subsides, but after rest it begins again.  Also, her endurance is far from what it used to be - but this was waning in the past 5 years, 

       There are stories of those who, aware of their plight with this disease, do as much as possible while they still have the ability, and know what is to come.  For Mom and the family, this was not the case.  It was simply a slowing down over time, with some falls.  Mom fell a couple of times - the last she got her face and hands.  The time before she slipped on her driveway and damaged her hip.  

    According to one reliable source, Mom can go to something like a bull-in-a-china-shop, and hit things on the way (believe me, this is Mom).  There is also the ability to fall.  Eventually, there will be times when she will just fall over (or so they tell me) and won't be able to maintain her balance very well.  But, for now, Mom seems to be pretty aware of herself balance-wise, and takes my arm when she feels it necessary. 

So, there I leave you with this.  On Thursday I will have attempted to carry on with more information about the Phases.  It's not, actually, a door I wish to pry open (the later stuff, that is) but to be fore-warned is to be fore-armed.  

Till then!

Busy! Busy! Busy! The Week Ending 10/19/2014

This week proved to be something of a boon for Mom.  She had some unexpected visitors!

Yes!

Her cousin, Janet, brought her sister, Marion, who is visiting from Allentown, PA, along with her to take Mom to lunch.  I've not heard a report yet, but expect they had a wonderful time!

Mom had Bingo this week, as well, and then her massage.

Later, the RLC came to visit on Friday.  What an interesting time they had.

Mom read them the letters, one-by-one, she'd received from her friends, then, as she finished, she had Connie and Jean sort them into piles on her bed.  After this task was complete, they were bundled and put neatly into a place where Mother could easily access them.

Next, they played Scrabble.  It seems Mom wasn't always able to track who's turn it was, but then that's something many have trouble with, while engaged in hearty chitter-chatter with friends.  So, they played.

 Not too sure if they're keeping score any longer, but it's the visiting, the letters, cards, and pictures that help her immensely.

This evening, we had dinner with my brother, Lawrence, and his lovely wife, Kathleen, with whom Mom has grown rather fond.

Mom was up and ready to get going around 6 pm, before having dinner.  She was delighted we were going to eat there.  So, after a couple of glasses of wine, we sat down to eat.

She kept talking about how students and other teachers were going into her room and stealing her soda and tests.  What she really meant was that she believes people are taking the soda and other assorted treats she has from her room at her residence - at least this time she's not talking about how her clothes are missing and books, etc.

Mom enjoys watching some of the SF/Denver game after dinner.

She did mention that her eye drops would crystalize  in her eyes soon after they'd been given.  I'm not sure if this is still the case (in other words, she imagines this is occurring either from the opacity of the drops and her vision, or if she's using her old drops and they are irritating her eyes).

Many of her comments this evening made no sense - that is to say, she would begin speaking about one thing and in the next breath counter that - causing my brother and me to look at one another with a "Wha-----?" glance.

All in all, it was very pleasant.  She took her medications with no struggle, and truly enjoyed herself.

There was one point, in the evening, though, where she was speaking about how people come in and take things, which she really didn't care about as they weren't hers in the first place.  Then, she spoke of how some people see things and think it fine to just take them.  My brother stated, "We don't know anyone who would see something belonging to someone else and just take it, do we?" with a laugh.  Mom, with an instant look of guilt (which vanished in the blink of an eye), turned her head away saying, "NO!"  We had a good laugh.

This has to do with Mom's penchant, in the past, for seeing things in our homes that she deigned would look better or serve better purpose in hers, and then chug off with it.  We would find it missing and then upon visiting her would find it, as though it had always been in its place there.  She would deny she'd taken it, and that we had given it to her.  Hmmmmmm.  Karma?  at least in her imagination.

Capgras Syndrome - A Symptom We Hope to Not Encounter Again!

We've already spoken of the different symptoms of Lewy Body Dementia (LBD), confusion, REM Sleep Disorder, Confusion, Hallucinations, etc.  But one that I find fascinating, and nearly thought Mom was beginning to experience was Capgras Syndrome - or the delusion that someone  (usually a person who is very close and endeared to the patient) is an imposter, posing as someone else.  For instance, if I were to sit down next to Mom, she would ask me where I was, as I was not who I was - I was an imposter!   I'm really hoping this doesn't happen, but if it does, then I pray I'm able to handle it with aplomb.

According to the National Institutes on Aging, Capgras Syndrome is:
Capgras syndrome is characterized by the recurrent, transient belief that a person has been replaced by an identical imposter.   (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3713629/.  09/15/2014.)

This is identified in approximately 17-20% of Dementia Patients.  It is not only seen in LBD patients, but Alzheimer's as well.  However, it is seen as a symptom of LBD, and due to Mom's anxiety, and her propensity for hallucinations, especially of late, she falls into the category of those who may develop the syndrome.   

According to the literature found on PsychCentral, Mom actually did have an occurrence.  This was when she called me in a panic, to tell how she was being held hostage in a house that was not hers!  She wanted to sneak out to her car and drive around to find her own home, but I convinced her to find a bed and sleep it off - she'd have better luck in the morning (it was dark outside, and Lord knows what could have happened had she been in this state and driving!).  She obliged.  

Another time was when she was convinced she had been moved, overnight, from Port Angeles to Cedar Hills in Portland.  She told me the house was similar, and she still had the view of the Straits of Juan de Fuca, and the movers had done such a nice job it was very nearly as it was at her "old house." This actually went on a few days, until her friend called her and then went over convincing her she was actually at home in Port Angeles (Whew!)  So, the next day she phoned and told me they had moved her back overnight.  This incident provided us with a little dilemma - she'd call and want us to come over for coffee or dinner. We (my brother and I) would have to decline, which disappointed her and made her a little bitter.  But what else could we do?  Port Angeles is about 4 hours away!

Mom did present this delusion at other times as when on Christmas morning she thought we were eating at my house, but then changed to their old Portland home, and finally, exasperated, thought I was playing tricks on her when I told her we were really in her own home, there in PA.  There were mild episodes that, at one point in time, seemed innocent, but I had no real idea what was truly occurring.  

     Here's an anctidote from PsychCentral:

At 3 a.m., wearing pajamas and socks, an 89-year-old man with Lewy Body Dementia was found by a security guard four floors below his apartment. His walker was later found abandoned on the second floor. Agitated and confused, he insisted repeatedly that he was looking for his “other” apartment. “I know we have two, exactly alike, one that we sleep in at night,” he said. “But I can’t find the other one.”

        and another

A 65-year-old woman diagnosed with early-onset Alzheimer’s Disease had what had become a typical spat with her spouse of 40 years. He argued, furious and insulted, “I’m your husband! Don’t you know me?!” “You look exactly like him,” she said quietly, “but I know that you’re not him.” Nothing could convince her otherwise, though the man told her many things only her husband would know. “You are one of the two imposters that come around here, not my husband,” she insisted.

This gives an idea of what to expect.  Although Mom is on medication, I'm hoping the doctor might be able to re-evaluate her dosages to bypass any further incidents - but my hopes may be in vain.  

Should this syndrome present itself in the future (near or far), i'll feel a little more prepared...

The Week Ending 9/14/2014

What a bumpy ride this week was!

Mom reacts to silliness

Tuesday, I went to pick Mother up for the funeral.  She wasn't dressed poorly, but not how I would want my mother to look at a funeral (very casual clothes).  But, considering the circumstances, there was very little time for figuring a change of clothes for her.  So, off we went.

The funeral was right down the street from Mom's residence, which made it all the easier.  As we walked in, she was reunited with two classmates from St. Mary's Academy.  She knew who they were, but didn't have a great deal to say to them, except that she remembered them.

During the rite, she inquired where Dad had gone.  I probed for more information and was informed that he had come with us and then just a moment before had just left.  I told her he had a couple of errands to run, but would try to be back in good time.  She bought it.  Whew!

After the funeral, which was nice and small, we went to the reception where we sat with her classmates and the departed's sister (who had delivered the eulogy).

Mom kept asking them the same questions about where they lived and when they graduated.  They handled it wonderfully.  They asked where Mom lived, and I told them at St. Anthony's.  Then they seemed to understand.

This was very good for Mom.  She had some good mental stimulation and it was outside the box for her - going down memory lane with people she'd not seen almost 67 years ago.  Wow!

When I returned her, she was full from the cake and punch, so she wanted to nap.

I then checked in with the staff.  They informed me she was under the belief I was sleeping in her bed with her every night, but getting up early to return at some point - she was waiting in her room every morning for my entry; I told the staff to tell her to go ahead and do whatever until I returned.

The staff also informed me that she had really declined in the previous two weeks.  Her hallucinations were more pronounced and she was not sleeping as well.

Thursday, the RLC came to visit armed with Trivial Pursuits.  The reports were positive.  Everyone had strong suits, and it provided a great deal of fodder for chatting.  It was a great change from the weekly Scrabble game.

Today, Sunday, I went in early to take Mom to Mass.  She was in a mood.  One of the staff, who she normally likes and enjoys was receiving Mom's wrath!  Mom was insulting and muttering evil under her breath.  What I wasn't aware of was this happened daily for the past week and a half!  My fear was Mom was beginning to suffer from capgras, or the delusion that someone is not really who they are (when they truly are!).  But, I was wrong.  Phew!

As I put Mom's stockings on her feet, she began cursing at me and called me a very disgusting name.  I looked up and told her that if she ever spoke to me like that again I would leave immediately.  This helped close her yap.   On the lighter side, her feet have begun to shrink in girth - her shoes are beginning to fit much better.

Finally, we were able to leave.  On the way to Mass, she told me to never threaten her again.  I stated that what she said was absolutely inappropriate and for her to remember that if she insulted me then it boomeranged back to her, as I was supposedly her genetic product.  Again, she went silent.  And then the day began to brighten.

Walking to and from Mass and the car, I noted that her shuffling is much greater.  Her balance was improved, but she is truly shuffling.

We went to Jean's for a lovely lasagne lunch and a wonderful visit.  After lunch and pineapple sherbet, we left.  Mom told me that Jean's family had had that piece of property for generations, and developed it.  She told me how wise Jean's grandfather had been to set that piece of property aside for his children and grandchildren.  I thought, 'What a wonderful delusion that I must share with Jean!' as this was far from true, but in Mom's reality it is.

I dropped her off and she went down for a nap.  She was truly exhausted.  So, after I placed the orchid back in the window, and the beautiful dahlias Jean had given her next to it, I parted.

Wondering what adventures this next week will bring!   

The Week Ending 8/31/2014 - OR Where Are We?

Wow!  I have more photos from Monday, so I hope you'll forgive me for posting a couple  more of them...I just discovered I'd taken many more than I'd thought!

This morning, I went to pick Mom up for Mass.  When I arrived, the Med-Aide was already putting on her stockings!  Yay!  She asked if I'd rather do it, I smiled and politely refused.  It's nice to see how Mom reacts to someone else doing the chore.  
   It would seem that Mom had fallen asleep at the breakfast table, and she complained that there were just too many people going in and out of her room all night long.

Mom with Bernie's son, Josh (her grandnephew)

     Oh dear.  The hallucinations are beginning to rear their head again.

Mom told me, as she was getting herself ready, that this morning Dad had stopped by and they'd chatted.
     "About what?" I inquired.
     "Just things married people talk about.  Nothing really all that interesting," was her response.  "Then he left to check things out in another part of the building, but he hasn't returned.  We should probably wait for him."
     "Well, we can do that, but we're already late.  If he wants to come, then he can meet us there."
  She responded positively to this.

I asked her about her week and she told me that I owed her an apology.  I was supposed to take her to see family yesterday.  I reminded her of Monday, but she told me that was all talk; it never happened, and was supposed to have happened yesterday.  <sigh>

Little Pete and his wife, Alicia and grandchildren

   On our way to Mass, she inquired about her mother.  She wanted to know if she was invited to lunch with us, as our grandmother had always been fond of Jean and vice versa.
    "I doubt it.  I believe Gag (our grandmother's nickname) has other plans."
    "Well, she wouldn't if she'd known!" was her response.  I then segued to her BINGO game.  The trick worked.
    Later, at Jean's, she demanded I phone my grandmother and invite her over.  So I faked a call and left a "voice message" for my grandmother.  I suggested she was out shopping, possibly with Jean's mom.  Jean went along with this.
    Mom kept bringing up people as though they were still alive, and that she'd visited with them this week.  Her grandmother, her mother, my dad, her brother.  She even told me I was out of line when she asked about Dad's siblings and mother, and how they were doing.  I told her Uncle Bob was dead, and she thought I was just awful!  So, we played along.
     Her stockings seem to be another sticking point for her.  She told me they needed to be changed every hour.  Then, later, it became every 8 hours.
    She told Jean that it was necessary, with these compression stockings, they be hand-washed nightly, and then dried in the forest on trees and such.  I believe Jean asked her to clarify this, and thought, perhaps, it made more sense to dry them in the shower, but Mom told us that it was supposed to be in the woods!
     Okay.
   We had a pleasant lunch, and then we headed back.  Mom was tired.
   I had spoken to the staff a little over a week ago about her clothes and having them all cleaned.  They needed the time, on Sunday, for me to  take her out so they could go through her things and get all the dirty items from her closet and drawers (Mom is oblivious to dirt on her outer clothing - her undergarments, I believe, she won't wear more than once without laundering).  She has been wearing clothes that she hides from them (so they won't wash them - I know, it's odd), so this was imperative.  I cannot have my mother going out with food clotted clothes!
    When we came home, though, she had folded towels on her bed, all the clothes in the closet were clean and hanging, and there was a sense of freshness all around.
     Mom was upset they had gone through her laundry hamper!
     Oh Oh.  Well, at least her clothes are clean.

Mom has a bamboo orchid in her room, now.  

So, it's off to another week for her.

She is walking more with Mo, at the facility, but her energy levels are dropping, it would seem.  Not sure why.
   We're trying to keep her away from so many sweets, as well, so the RLC will be looking into alternative treats (perhaps the dried cherries and blueberries in her upper cabinets would do....).  She was out of oranges because, she stated, people have been stealing them!  Truth is, it's been over a month since I bought any, and I realized she hadn't put any in the drawers or cupboards or boxes in the closet - so she had actually eaten them!  So, this week I probably should swing by with a bunch.

I'm hoping there is a plateau in this hallucinatory chapter - but I fear not.  This could become the norm, now.  I sense frustration in her, then a sense of calm, knowing everyone is still around.  Her brother is teaching at University of Washington on a sabbatical, all her other relatives are about, and Dad is visiting her.  This is actually somewhat comforting rather than disturbing.  If you need to know why, I'll let you think on it.

Till next week.

Ciao.

The Week Ending 08/03/2014

Not a particularly frantic week for Mom, this week.

She played BINGO, and won.

She had her Physical Therapy.

She had her massage.

She had a Mani-Pedi!  And, she also had the promise of a perm this next Wednesday!   She was very happy with her new nail color (My mother NEVER did this before - she eschewed such pampering as frivolous and a waste of money - now she enjoys it at least once a month...mostly because it helps her keep her toenails in check) - a deep blood red.  When Jean asked her what color it was Mom was at a loss.  I dubbed it DNA.  WE chuckled.

On Wednesday, the RLC came to play Scrabble.  Of course, I received a call asking about my Uncle Peter, as Mom stated that she had spoken to him and he was on his way over from his house.  I told the ladies to simply play Scrabble, and if he showed, then they could invite him to play, or to allow them to visit; so they played.  My uncle lives in Reno, and Mom has thought him to have phoned several times, before, but when I called him, no such activity had occurred, so I felt rather confident.

Monday, though, Mom had reported falling down at my brother's house during her dinner visit.  I received the call, and thought about the previous day - and no, there was no evidence she had slipped, tripped, stumbled or fallen during her visit.  Had she, I know my sister-in-law would have not only said something, but would have been quite vigilant about ensuring Mom's safety while traveling from the deck into the house and any other ventures she might have undertaken - non of this happened.

Of course, the staff stated Mom had shown her where, on her body, she had hit, and there were no bruises, or anything that would present a fall.  But it was reported.  I did receive a call, as well, from their administrator about this and we had a chat.

Mom is hallucinating or, rather, imagining events that occur in her dreams or early waking states.  While they are interesting, to those who are not completely aware of what's actually taking place in her life they are a little unsettling, or confusing.

Well, this week  has been hot! Hot! Hot!  And, I've been without a car due to an accident the previous week - and while my car was in the shop I had to hoof it a few days.  Finally, I was granted a loaner, which allowed me to visit and take her to Mass and Jean's this morning.

When I arrived at St. A's, Mom wanted to go to Mass in her sweater-vest, and a long-sleeved warm shirt, companioned with a pair of thin sweats.  I told her these wouldn't do, and we needed to have a look-see at some of the clothes my brother and his wife from Port Orchard had selected for her from the stores.  She balked.  Then she called me a real bully, as I told her we wouldn't leave until I was satisfied with what she was wearing, and she had proven to me she had at least tried something on from the new collection.

When I came in, she had put on a new pair of pants, and a sleeveless shirt with a lace back.  She looked cool and comfortable.  She stated she felt indecent - I told her she wasn't yet at stripper status.  She found no humor in that.

We went to Mass and then to Jean's for lunch.  Jean served us wraps she'd ordered from Freddy's - they were good!

After we'd eaten, we went for a walk around the block.  We saw 'Schatzie's' house (Paul Schatz), and the Neidermeyer's, and some of the other familiar names Mom and Jean had grown up with in Irvington.  We also passed the Hodges/Marion home where Mom had lived as a girl, only a block away.  She found much of the neighborhood changed from the time she was a girl.

When we came back her back was hurting and she was hot and tired. So, we measured her for her compression stockings, then decided I'd run to the pharmacy on my own to get them later in the day, so Mom wouldn't need to sit in the blazing sun or hurt more from walking around.  When asked if she really did want to go, Mom just said, "No.  You do it, but get those to me as soon as possible!"

When I dropped her off, she was tired.  The reports were that the Melatonin was working and she was sleeping very well this past week.  However, this morning she'd risen earlier than normal, and reported that she didn't sleep very well, at all.  So, she was going off to slumberland when I left, after reminding her to elevate her feet in her recliner.  She had a soft, faint smile as I left, of one ready to nod off.

Hopefully I can get those stockings to her by tomorrow, and make her appointment with the eye doctor for the next week or so.  And, there are some movies that are coming out she would actually appreciate.  These are things to which she can look forward, as long as she knows about them in the near future...like a day ahead.

The Week Ending 5/25/2014

It's been a week!

Mom had her crown put back on, this time quite securely; however, this morning I was met with the corpse of another crown (not sure if it's the same one - it looks different, and it seems as though it shall find itself buried!).  So, another call to Dr. Handick will take place Tuesday.

This morning found Mother quite rosy and chipper, but unsettled and anxious.  It would appear that due to the "Boil Water Notice" that Portland underwent Friday through Saturday meant that her water was shut off for the weekend in her apartment.  Although she seemed in good spirit, this was out of routine, and it was brooding under her skin.

Although she'd already had her hand cream put on, she demanded more; standing over the med aid who was on the phone with a family member for another resident.  Mom snooped at what was on the printer and picked up a  letter - she handed it to me and asked me what I knew about it (as if!).  It was addressed to me, care of Nadya in Port Angeles.  I told her I'd mail it, and she smiled.

Once she was able to get her hand cream, we went into her room, and she began to ready herself for Mass.  They had given her bottled water, but her bottle was dry, so I found a tap that worked and brought her more, discovering more water in her refrigerator...."Yes, I knew I had more, but I wanted that one filled," she exclaimed.

After calling one staff "The Animal", and making statements about the incompetency of the others (this meant they weren't fully focused on what she wanted when she demanded it), I was able to spirit her out of the building and into the car.

"This weekend, I believe it's time for you and your brothers to make plans to get me out of here.  I don't care where I go, just anywhere I'm not locked in", she stated matter-of-factly.

"I get where you're coming from," I replied.  This seemed to appease her.

"You know, you had better stop barking orders at me.  It's not your place to bark orders," she stated after a little silence.
  "When did I bark orders?"
   " When you told me we needed to leave."
  "I simply asked you to brush your teeth so we could go."
  "That's what I'm talking about.  That's not your place."
  "Did you want to be late?"
  "We have plenty of time."
  "We're 15 minutes late."
  "Oh.  Why didn't you tell me it began at 10.  When did it change to 10 from 10:30?"
  "Never.  It's always been 10."
  "Stop trying to confuse me!"
Then silence...I stifled a chuckle, as this happened well before her condition, as well.

We had a nice chat about the trees, yards, homes, people we passed as we drove down Cesar Chavez, then down across 33rd Avenue to the Irvington District, where the church is.

She seemed alert and aware, but that was a facade.  She kept saying things that demonstrated she was a little confused.  "Why are we parking so far from the church?" she inquired.

"We always park here.  In fact, we're closer today than we have been in the past."
"But it's several blocks!"
"No, it's right across from the stop sign you see up ahead."
"Oh, well, I knew that."

We went to Jean's house after Mass, and I poured both Mom and Jean a glass of Chardonnay.  Mom wasn't happy with the 1/2 glass rule, so I poured it to the rim.  She did a little bounce in her chair to show how happy this made her.

The conversation was about how Mother's Grandparents and other relatives had come over in the 15th century to America.  Jean questioned her about this, and how it could be they preceded Columbus.  Mom contemplated this and then told Jean she meant the 1500's.   I just listened with awe.  I wanted to see how Jean handled this.  She did so with style.

Later, Mom was discussing her grandmother in New York.  "I should probably write her - I believe she's still alive, you know.  She was a very hardy woman."
 "Mom, she'd be over 130 years old."
  "That's right.  She's hardy."
Jean looked at me and smiled.

We had a good lunch of pizza and asparagus, wine (for them), and then Mom had two bowls of ice cream with strawberries.  She was in heaven, and the second glass of wine was working its magic - that and her medications I gave her.

After she took a short nap on Jean

's couch, we left.

I knew she needed more little oranges (she loves the Cuties) and soda, but she told me not to worry about it.  She told me that all the soda I'd bought for her had been slowly stolen, as had the oranges.  I began to tell her she had consumed it, but then stopped, realizing this was a battle that couldn't be.  So, I told her we'd skip the store.

She asked if she could go to the eye doctor to see exactly where in her eyes she should be placing the eye drops.  I told her no doctor would be working today, except the hospital, and we didn't need that wait or expense.  This appeased her.  The truth?  The doctors all told her it didn't matter.  She's not buying that.  <sigh>

I dropped her off and she wanted to know why we hadn't gone to the store.  So, I told her I was tired (truth!!!) and I would go later and see her during the week.  Appeasement!!!!

Later, I arrived home and read the letter  (I will transcribe the main portions for you):
                                                                                      May 22, 2014

Dear Tony,
                Since I'm planning on returning home near the above date, I thought you'd want to know.  This has been a strange year but some good things!  That includes getting my furniture back to our house there.  Your dad will need your assistance and that of your brothers - as much as possible.  If you could call my brother, I think his son will help you.  That's primarily a kind of simple problem.
          The book being reviewed is Oxygen by Carol Cassella.  I'll look for a used copy and maybe you'd like one too.  Please let --------know too.  I'm sure she'll be happy to see you.
          Please let your brothers know of the plan.  I probably wont' be completely vexed for a week or 2 after the date.  It will be wonderful to be home and near you and your brothers. 
    If you can find a used copy, it'd be fine.  
When we leave here - it's for good.
    Come see us when you can - 
    I hope soon -
     It'll be wonderful when contact by phone, letter or best in person, will be the norm.
Much love,
Mother and Dad.
PS. - - - - - 
     If you can find used books, it'd be great. 
     Love you, miss you and look forward to seeing you after a nice trip.
                                                                       
There's more, but that's private.

This demonstrates where she is at this time.  It's the most confused letter I've received or read from her to anyone (if the letters come back, and I'm not able to locate an address, then I put them aside...I've read one or two, and received a couple of my own via St. A's, when I pick up her mail.)

I do believe we may have come further into the foyer of the dementia, and are looking for which door will be the first to enter....

I make the appointment with the neurologist Tuesday.  Hopefully, this will be a way to find guidance.