A Review of the Year - A Quick Synopsis and update

This blog was supposed to be about Lewy Body and comparing it to PDD and AD...but for some reason I was moved by a conversation I had earlier at the residence with the RN, and my day with Mammy.


Wow.

To think it's been a year since Mom was diagnosed.   It doesn't feel that long - but then there hasn't been a great deal of down time - even though I'm not the caretaker for her 24/7.

Where she was when she first came in from Highline Hospital to now, in retrospect, is great.

She was shuffling, had pains in her sides and shoulders, and was a real grumpus!

Now, she's moving much better, albeit still a little lighter on her shuffling, but still shuffling, and her attitude has become rosier and, as a friend of her stated, kind.

She is relaxed (not only due to the medications, but also to the staff and the routine she can rely on,) without the worries of a house, car, yard, etc.  She receives letters, she can do her crossword without having to be someplace;  in a sense, she is luxuriating.

However, this comes at a cost.

Yesterday a woman she has known throughout the ages and was re-connected with - more so a friend to another up in Port Angeles, died yesterday.  Another patient died last month, and this brought Mother down.  Yet, either she doesn't realize this other one has passed, or has forgotten.

She still writes her parents (I'm looking at an Xmas/birthday card at this moment for her mum), cannot remember much - for instance where we've resided (towns, etc), years,  that she's been to Europe, especially England many times (she cannot believe I think she went to Wales and Ireland with Dad - and Scotland after, then Paris)she told me I had a vivid imagination!

When things befuddle her she discounts them, now.  She's not reading much, but says it's the book's fault (which it well may be).

She loves Physical Therapy and her massages!  This morning she was kicking the stability ball with great force, they tell me.  She laughed!  She really likes that stuff.  And the balloon batting - that's so much fun (great for mobility!).

I've not seen her so content ever.  She wants to go back home, but I can sense, strongly, she isn't all that eager.  Here she's safe, cared for, and enjoys many of the workers (she says the other residence are just kooks and out of their minds!).

Today we went back to the dentist with 2 crowns.  Well, Dr. Brad, the saint that he is, dealt with them.  He even spoke to her about her eye drops!  I had asked if he could "consult" with her about them, as she was quite concerned that she wasn't putting them in the correct portion of her eyes.  He explained it didn't matter as the fluid would find its way (same thing her eye doctor told her earlier this year!).   This pleased her greatly!

We then went to the Golden Crown for lunch.  We'd been there many times as a family over the years, but she didn't recall being there ever.  She didn't even remember having lunch with her cousin, Alice, and Alice's daughter, Kip, at the same restaurant a few months back.  Well, I guess she gets to relive the adventures over and over and over!  Lucky gal!

We went to Gabriel Park and took a short walk - by this time she was tired.  She'd had an active day, and was in great spirits!  So she said, "I guess it's time to go back to St. Anthony's!"  and so we did.

Mom's moodiness has diminished greatly.  She does need to be a part of conversations else she feels left out and insignificant - hence she wants to leave, do something else, or whatever.

She no longer seems to pick fights with that other patient mentioned several posts ago.  They keep their distance.

She helps some of the other patients, much to the chagrin of the staff (liability, etc), but it gives her spirits a lift knowing she's giving succor or aid to someone who needs it when no other is around.

As she declines, Mom is becoming a wonderful and very charming lady.  Bittersweet, really.

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.

Moving Forward....????

Ah.  The sweet smells of Spring.

As I recall, last year, at this time (I wasn't blogging then) Mom was in her first full month at St. A's.  She wasn't happy.  She was convinced she'd been hijacked by my two oldest brothers, and her furniture was, as well.

Mom at lunch on Monday.  She wasn't thrilled about the photo op - can you tell?

There was confusion, but moreover, she was as angry as a swarm of bees about her furniture being in her room.  She stated quite often and clearly, that she would prefer it go back "home" and she'd be content to sleep on the floor.  Well, we couldn't let that happen.

We learnt, too, that too many activities with the family made her somewhat grouchy and demanding.  Remember, we were all in the learning stages of the illness and her condition, as well.  Some of us were exhausted from the emotional and physical stress of dealing with the matters at hand, and, of course, having to deal with this situation.

Mom was shuffling and stooped as she walked.  She complained about her right side and shoulder being quite tender and shooting pains going up and down.  Vicodin wasn't working very well, and we were having some troubles getting the doctor to see her (especially in the fall, when the doctor decided not to make in-house calls anymore).

As to her medications, Mom was having an issue with the vitamin C pills - they were large, and she complained they were a bit dry.  Now she has gummies - and she enjoys them.

It would appear she is growing better.  But appearances can be false!  Oh! Fie! Fie! Fie!

I was able to find the following link to a pdf from the National Institute on Aging,  - it's free, and it's on LBD, symptoms, medications, etc.  Even though I've been reading a great deal on this form of dementia, knowing there are so many out there who've not realized it exists, it really puts things together in a concise, easy to understand manner.  

Here it is: Lewy-Body-Syndrome-Pamphlet


Now, you can download it, print it, whatever.  It does a great job of explaining.

As I was perusing and poring over the text, I had to think about the changes in Mom over the year.

1.  Hallucinations - These are still occuring, but they are quite benign compared to earlier before diagnosis.   The medications seem to have lessened them to memories, or at least dreams that seem to be real for her.  A Positive!

2.  Shuffling & Walking - Since she began Physical Therapy, and the Massages are Deep Tissue now, she is more able to get around without the stooped posture, and the pain has lessened, although the complaints are there.  Her massage therapist reports that she complains of pain in certain areas which are consistent from week - to - week.  This is also a positive, but the pains will probably grow with stiffness as the disease progresses.

3.  Troubles Swallowing - This is now growing more evident.  At first, as I stated above, she had some issues with the pills.  She still seems to have some problems, but the staff puts some pills in with pudding, which helps her swallow them with more ease.  I tend to give her a milkshake or ice cream which makes her face light up while she swallows them.
     Yesterday, at lunch, after the dentist visit (they were so wonderful!  They didn't even charge!), I took her for a drive around the area and then to a pub.  She was having difficulty swallowing her hamburger.  Once in a while, this would be normal, but she had problems with most of the meal - and drank a great deal of water and iced tea.  This gave me pause, as I hadn't thought about this issue much in the past.

4.  Stooped Posture - Mom is gaining weight - probably from lack of hearty exercise she had grown so used to with her hiking groups, and her daily walks.  But she seems to be standing taller now, and I believe this is owed to the massages and the P/T.

5.  Mood Changes - Mom has been quite pleasant!  This isn't to say she wasn't a warm-hearted person before, but she seems to delight in the small things, now, that she would have poo-poo'd before as nice, but not important.  It's quite interesting to take her about the city where she tells tales of childhood antics, her parents, friends, etc.  Much may be true, but it's a way for her to relate.
    Mom grows stubborn and churlish when her routine is changed - so when the staff goes on vacation she isn't too charmed about that.....
     She does have her serious side more as usual, though.  Now, it's all about moving her furniture back to her home; yet she does call St. A's home.   She has laughed a little more than I recall in the past, as well.

6.  Capgras Syndrome - Nope, not yet.  This is where the patient is convinced someone close to them is an imposter and not really who they say they are.  There are ways to handle this, but each person is different - luckily, not on the list of things to deal with yet.

7.  Blood Pressure - Mom's blood pressure remains stable.  She does take medication this, and enjoys adding the numbers.  She hates the squeeze of the band, though.  I mean, she HATES it!

I believe that's enough for now.

Do please read the pamphlet, though.  It's actually quite complete, and makes me ponder as I read the other books.

Hopefully, Mom will be able to continue to hold off the progression, but for how long, we know not.

Routine Routine Rotten Routine! Week of 5/12 - 5/18/2014

Note - The pictures posted were taken by Mom before diagnosis.  The final picture is of her today - from my camera.  These photos, for the most part, have no real bearing on the post.  They are simply Mom....

Mom in a naughty mood - September 2012

An odd week.

Not so much as aliens venturing onto our lone little planet or anything like that, but just odd.

Might have been the full moon that languished largely in the sky.  That's it!  Blame it!

But truth be told, it was the two people Mother holds dear to her heart, as they take such good care of her - Leddy and Morina.

Leddy left for a vacation about a week ago (I learnt this this morning), and Mom wasn't very happy about it.

After our delightful day, Sunday, I told my brother and his wife, who were passing through town for a visit, that she was in wonderful spirits - she was the most positive I've seen her for so long.

The next day, though, she wasn't quite as delightful.  From what I gathered, she was a bit of a pill!  Oi!

Mom with Uncle Peter - He calls her his "Nonny NuNu!"

Wednesday, she wasn't much better.  She was snippy and in a rather ill-humor.  Luckily she was scheduled for a hair appointment after 1 pm, so I took her to the doctor, then lunch at Burgerville (where she had her requisite milkshake), and dropped her off - she was tired, though.

It was a nagging question, though - what made her change from such a goodly-natured mum to an almost bitter, demanding creature?

Then, this morning I discovered it was all about routine.  Leddy and Mo (Morina) had gone on vacation and Mom was worried before they left, last week.  This week she kept asking for them, but they weren't there.

Routine for Mom is important.   If there isn't something that distracts her from what usually happens and how it happens, then it can be as though someone put her in a capsule and shot her off to God knows where.

Mom with Cousins Janet, Alice, and Marion at Aunt Suzy's gravesite  2012

She knows about her pills.  She knows she's supposed (well, only because we allow her) to have one to two glasses of wine with dinner. She knows when breakfast is.   She knows she's never been to my house (actually, for the unknowing, she used to spend a great deal of time at my home over the years, and was quite familiar with it).  She also knows how things work at the residence.
But, without these two elements, she's lost.  She feels lonely and abandoned.

This isn't anything new for her.

I recall Christmas of 2012.  As I spent time with her that holiday season it seemed as though my presence was throwing her out of whack with her routines and thinking.  Finally, I decided it would be better for her if I were to leave a day early.  This was met with anger.  However, the anger subsided two days later when we had a wonderful chat on the phone; it was as though nothing had happened.  By that time, however, we had noted a change in her thinking, behavior, and we were quite worried (we had had the intervention chat the previous summer which made her fume!).

Today, though, I picked her up, she chided me for being absent for so long (she'd thought I was going to be there yesterday and the day before and the day before and the day before...), and then she happily made herself ready for church.

Mom with Cousins Janet and Marion at Hurricane Ridge, Olympic Nat'l Park, Washington  2012

She wanted to know if we were going to Jean's house after, and I told her "Yes!"

This made today calm, positive, and tiring for her.

She had a wonderful time chatting with Jean and her visiting children and spouses.   She and Jean chatted about people they knew once upon a time in school.   It was good for her and her brain.

The alpha-synucleic acids haven't completely destroyed her neurons altogether - just in the short term memory, and the long-term that wasn't completely imbued with her immediate life.

Tomorrow we hie to the dentist (Dr. Brad) to have her crown, once again, put back on.  I really do think she has a crush on him. - she says "Pshaw!  he's too young, and how dare you try to make a match for me!"

 I like it when she turns red.

Warming Back Up to Routine

LBD - More Symptoms -Sleeping Disorders Part One: RBD (REM Sleep Behavior Disorder)

Wow.

Reading and keeping up with all this can be something of a ride!

I've been cuddling up with the book - A Caregiver's Guide to Lewy Body Dementia by Helen Buell Whitworth and James Whitworth (Hamilton Printing Company.  New York. 2011.), and it's just so full of useful information!

While I've shared some of what they've parlanced earlier in my blog, I've tried to keep things short and sweet - digestible in a sense.  I hope I have.

Today, I'm going to share with you about  a Sleeping Disorder - rather, REM Sleep Behavior Disorder (RBD).  While there are more, I'm going to do my best to keep this as succinct as I possibly can.


According to the Whitworths -

     During normal dreams, or rapid eye movement (REM) sleep, the eyes move so much that they make the eyelids flutter.  However, the rest of a normally functioning body is temporarily paralyzed, which allows the body to remain at rest during even the most active dream sequences.  REM sleep behavior disorder is a brain dysfunction that removes this restriction and allows movement.  When people with RBD dream, they act out their dreams, talking and moving their limbs and sometimes becoming quite violent.  RBD is also called "active dreaming." These dreams, like hallucinations and delusions, are behavioral symptoms of LBD.

RBD is very common with LBD patients that it is known as a defining symptom.  They say it can begin well before any other signs may be present, and approximately 50% of those who present this sign will eventually be diagnosed with LBD; and if they already have Parkinson's disease, then the rate goes even higher.  

I'm not sure if this is a symptom with Mom.  As Dad passed approximately 19 years ago this July 13, no one has actually slept in the same room as she; however 10 years ago, I did voyage with her to the UK where we shared hotel accommodations, I was unaware of  any sort of activity of this sort.  So, with her this is not present, insofar as we are aware.

This symptom is also present with sleepwalking and talking, but those are not necessarily paired with RBD.  

The authors warn that should you have flailing and active dreams, be wary of any stress-induced situations, such as surgery, or even a medicinal reaction could trigger the dementia.  

Oddly, my uncle, who recently passed and had Parkinson's, had been hit by a car while on vacation, and shortly thereafter was diagnosed with Parkinson's.  My reaction was that the bump on the head could have triggered the disease, but this makes me take another look.  I was right, but in the wrong direction, so to speak, perhaps.

RBD is seen as an early manifestation of of a degenerative brain disease as it results from a disruption of the normal sleep paralysis preventing muscle relaxation.  

Now this sleep phenomenon is quite curious.  There are many manifestations of this which can occur, many times at the risk of any other bed occupant's physical health.  There are warnings and recommendations that partners switch to twin beds so each might stay safe at night.

Later, I will be writing about other sleep disorders that could be early indicators of LBD.  At this time, though, there are some people I wish to contact to follow up, and see what they might have to say on this and the links to LBD from RBD.  

I will hope to be posting resources at a future date - and will also link this blogpost to it.  

If I've been able to pique your curiosity, then I'm glad.  

Later we will be able to explore RLS (Restless Leg Syndrome), and other Sleep Phenomena that may be linked to LBD.  

LBD, Mom, and Learning Day by Day....

Thank you, to the daughters of Kasey Kasem.    Their situation has highlighted LBD and now it's receiving some press!

http://www.nbcnews.com/health/health-news/casey-kasems-little-known-dementia-heartbreaking-docs-say-n104576


I'm truly grateful.  Why?  I'll tell you.

Mom and Nadya in 2012

Today, I took Mom in to see her doctor for a check up, and to get some topical cream for her hands (she broke out yesterday - probably from the flowers in her room, or some such allergic reaction).   Her doctor questioned my demand for a neurological referral.

"Why does she need to see a neurologist?"
"To determine where we are with her LBD."
"Huh?  What's LBD?"

Now, mind you, it is relatively new, and not everyone knows.  But this was a shocker!  I had believed that when Mom moved to Portland all her medical records and files transported with her.  Little did I realize - the meds were on target, everything pointed to people understanding....or maybe they were just following what they were told in the beginning?

"Lewy Body Dementia."  This was followed by a brief description of the affliction, and how it wasn't Alzheimer's - which was what she had believed.

She was shocked.  I was shocked.  I believe she was embarrassed.  But, I told her I needed someone who could see her, on Mom's insurance, who understood and was literate in LBD.  I believe she understood - We'll find out shortly.

a much younger Mom - probably in Victoria, BC (doesn't she look a little like the Queen?)

Later, I was speaking with the person who runs the cottages where Mom lives - and even he was uninformed.  So, I schooled him - We had a conversation which was informative to both of us, and I shared the link to the Lewy Body Dementia Support Page, on Google+.    This was quite affirming, knowing that people are interested and willing to find out more in order to serve their populations well.

Now, as flummoxed as I am, I need to remember that this is all new - not only to myself, but to most of you reading this.  I was simply at a loss as to how even the term hadn't been heard before.  The good news is that people are now learning about it, whether through celebrities who have been diagnosed, or through blogs such as this - it is now more relevant than ever to help educate myself and as many others as possible.

I had had another topic to discuss today, but I will probably put it off until tomorrow - about more symptoms, factors, and treatments for some aspects of the dementia - such as RLS, and EDS, and how the patients are affected by these (I'll let you figure out the abbreviations to keep your mind stimulated and working well!)

Happy Mother's Day!

This morning we were invited to join my brother and his family for a Mother's Day Brunch at the Hotel DeLux in downtown Portland.    Before we went, though, Mom had to have her blood pressure taken.

It was 149/66.  Mom did the math - she added it up, as usual, and as usual the calculation was on target!

I then presented her with a bouquet and some flowers.

From there we went to Hotel Delux and into the Green Room of Gracie's to meet with Lawrence, Kathleen, Megan, Frank and Maryann Krebs, Michael and Marc (Kathleen's parents, and her children) for brunch.  It was quite wonderful.  Lawrence was very generous!  He gave Mom a card and some CD's that she will very much enjoy.

From there, we parted ways, and went to St. A's for Mom to change so we could go for a walk.  She thought I should change, as well, from my pants and dress shirt, sweater and tie, but I hadn't thought to pack a bag - so I was stuck.

After a short time, we headed off to Vista House in the Gorge.  However, it seemed at least a quarter of the population had thought the same, and the lines for parking were quite long. So, we thought better of it, and put it down as something to do during the week.  We then headed off for Multnomah Falls.  

We noticed that there were cars everywhere, and many trying to find spots to park.  This was depressing.  We glided gently through the front of Multnomah Falls Parking lot, and found a spot, but Mother was less than rapturous about having to walk along the highway.  "Couldn't we find something else?  Could we go to Rooster Rock?" she asked with gleeful anticipation.  

"Sure!" I responded. 

We proceeded to drive to the I-84 on-ramp.  ON the way, though, we came to Horsetail Falls.  I queried her about parking and just taking a gander.  She thought it a wonderful idea.  So, we parked (a miracle to find a spot so quickly!), and walked over to view the falls.  

She wanted to hike a little ways up the trail - 0.4 miles didn't seem a long distance and very doable - at the time.  We hiked up and up and up the steep trail.  She stopped for breath several times, but she wasn't shuffling her feet.  I worried about her balance, and - voila! she was stooping and looking quite dizzy.   It would seem she was suffering vertigo - not a great deal, but enough.  

We kept going.  She wasn't going to give in - NO!  "We have to get up there!  It's not even a half a mile," she kept stating.  

Finally, after 0.2 miles, she decided it would be best to go back.  She was tired, a little dizzy, and we both worried about her ability to navigate the trail back down if she made it to the top.  

She was disappointed.  However, once we began to head back down, there was a twinkle in her eyes that belied how glad she was not going up any further.  She did not like my idea of just rolling down the hillside to the car lot below us.  

She was so very happy to be out in the open air, getting all the wonderful fresh air in her lungs, and feeling free!!!!

We made it back down without incident (except for the little trip she had from which she recovered quickly and didn't fall), and she rested on the bench gazing at the falls. 

From there, we headed back out to the Dairy Queen in Troutdale for a Strawberry Shortcake Blizzard (for her) which she delighted in!  Remember, she loves ice cream!

I returned her to St. A's after a long and busy day, happily weary, and duly spent.  I put on one of her new CD's from Lawrence while she relaxed in her recliner in her room.  

I then kissed her on the forehead and took my leave.  She had a very good Mother's Day this year!

__________________________________

Other Updates - 

Thursday we saw Dr. Brad who examined Mom's squishy teeth.  He gave her some gum tools (floss on a handle, and a gum stabber thing for between the teeth).  

I think she has a crush on him!

We will be phoning him again tomorrow because she lost her crown, again......

We then went to lunch at Shari's, and afterward we saw the movie, Heaven Is For Real.  

She really had a fun day, that day.  She was quite upset, though, as she thought I should attend the tea the next day.  Unfortunately, that couldn't happen as I do have a job....

Next week, we see the doctor, and, perhaps, Dr. Brad, and will hopefully have a referral for a neurologist.  

Mom is still trying to figure out how to move back to Port Angeles, and get a car and her driver's license.  She also wants me to quit my job so she can take care of me.  Yikes!

She's doing quite well, though, and she has been in the most positive space I've seen her in years!  Her outlook is rosy, and she's quite optimistic about most things. 

Letters and cards make her misty-eyed, and she loves having them there to share and read over and over.  

Thank you to everyone who has contributed to her life.  

A Good Lesson on Lewy Body Dementia

This week I was pondering what would come next for the post.  I had no idea.  It seemed as though I hadn't enough time to settle my thoughts.  And then I noticed something that was staring at me all along - technology!

I'm still reading the books, but I wanted to give my readers (Thank you, by the way!  I'm incredibly humbled by the number of views this blog has had!) something that wasn't just words on a page; I needed something that spoke to them - and VOILA!  I went looking for anything that could illuminate and stimulate us all - YouTube!

The following video(s) (I couldn't get them all in one launch - they didn't come that way and I'm not nearly talented enough to figure out how to glue them together - so your forgiveness, please) explain a goodly amount, and the speaker isn't dull.

I learnt a goodly amount from this, and pieces of the puzzle of Mom began to fall into place.  Yes, I still have questions, and next week, when we see her doctor, I will be able to ask some; but I'm hoping that the referral for a neurologist (someone who deals with LBD patients and isn't trying to put something together last minute) pans out to answer more.

So, please, at your leisure, view the following.  I hope this helps you understand and ask questions which will help guide this blog and us all to a better understanding.

I also need to give credit to the Lewy Body Dementia Association for their production (LBDAtv) of these videos.  I may use more in the future for edification of us all!

Part One - Difficulties in Diagnosing Lewy Body Dementia

Part Two  - Difficultines

Part Three

Part Four

Part Five

This has solidified many questions I had - Mom wants more salt - now I understand the need.  There are other portions of this video (in its entirety) that help make sense out of this entire situation.
    Until next time, Have a Wonderful Week!
Mom goes to the dentist tomorrow! Perhaps that will trigger something new!

The Week Ending May 4, 2014

I had another post, but it just isn't ready for my taste, for this week - it will come up sometime in the next week, I suppose.

This week was a little odd, but nothing out of the ordinary.  That's why the other post wasn't going to work.  Besides, this one is shorter.

Monday found Mom with her friends, Connie and Jean, playing Scrabble.  AS I heard nothing happened out of the ordinary, I assume all was well.  Well, as well as could be.

The rest of the week, according to Mom, was typical - in other words, there really wasn't anything she recalls that was special.  She reported that she didn't have any BINGO, and she did do something with a ball they kick around, but other than that - nada new.

Her massage therapist phoned me and told me that she was thinking of adopting a service dog.  Mom had told her she'd like that (well, this morning Mom said, "I don't want any animals coming around me!  I'm not fond of dogs!").  I stated that it might actually be good, as Mom had developed a fondness for my Samson, but I wasn't sure if Mom remembered him, now  (Nope!  she asked me who he was, why I would even think she would like him, and all that.).

Samson, my peke-a-poo

She isn't doing this for Mom - but for all her clients, as she works with those in care facilities, like Mom.  She's a good egg, this therapist.  Mom adores her.

So, yesterday my brother, Lawrence came by and they had a great chat.  He brought her lovely red roses, and they sit on the sill of her garden window.  She told me he gave her hope that she would be able to move by Monday, May 5.  She told me too, that he had been in the house and vouchsafed for all contents and that it was in great shape!  She was pleased (Now, for those of you who don't know, the chances of Mom moving back are extremely slim - as in 99.99% not able to).  This calmed her.

Today, she complained of back pain, and stated that her entire body shape has changed over the past year.  This may be.  Some of this I blame on the Lewy Bodies, and some on her lack of exercise and eating as much ice cream as she does (but how can you not give her something she adores considering...).

We went to Mass at the Madeleine, but only after she redirected me to St. Rose where we discovered we'd have to wait as Mass began at 1030.  "To The Madeleine!" she commanded!  So we hied ourselves there.

After Mass I took her to Newport Seafood Grill at the Lloyd Center (Jean was at a memorial service, so was unable to host).  It was good.  We both ordered the same thing.  A HUGE burger.  She ate nearly half of hers and that was that.  No more.  Oh - a glass of Riesling that she savored.  Good conversation.

I offered to take her to Lloyd Center for an ice cream, and for exercise, but she wanted to go to a park.  So, off we went to Columbia Park in North Portland.

Once there, we walked several feet when she exclaimed how nauseous she was feeling.  We walked to a bench, and sat there, watching the clouds, sun, birds, wind, and all there was before us.  She was blissful.

I remembered the swim center there being open air, and so did Mom.  How things change in 40 years!

It's always fun when Mom is relaxed and able to have some fun!

We then drove back and stopped at Jack-in-the-box for a strawberry milkshake for her.  By the time we returned to St. A's (where she told me to go, as she needed a good nap) she said she was feeling pretty spry and frisky; but she did want to lie down and nap a bit.

She seemed tired, but calm and serene.  She was upset that her mother had died - I made the mistake of telling her it happened 40 years ago, and she vilified me.  She's under the belief that her mother died a very short time ago.

I did manage to take my grandmother's birthday gift out of the room before I left, without telling Mom.  I also took out many many paper bags to help begin to curb the clutter.  She may notice.

She hasn't been reading, and she told me as much.  She said she hadn't read for 3 weeks, at least.  When probed for a reason she responded that she just had too many other things to do.

And, yes, we're still hoarding silverware (a spoon fell out of her purse today - I forgot to check if she took any from the restaurant).  But she seems content.

Isn't that what matters now?!