Being Prepared!

One thing none of us (well, there are those few) want to think about is an emergency where we are somehow incapacitated to deal with our immediate affairs.  How are YOU prepared for those?

Here are a few things you may wish to consider in the near future - just in case!

1.  Medical Stuff:
     Mobile Phones -   These can be a life-saver and a time saver!  Especially if you have an ICE app - IN Case Of Emergency - with information on who to phone, etc.
    There is also the Family Medical Information App on Googleplay store, Chromestore and iTunes app store.  This is a very handy application from Appentive.
      This app allows you to input your doctors, insurances, medications, allergies, conditions, etc., and it also interfaces with the ICE app from Appentive, so if your phone is locked, it adds another layer that allows the first responders to access the vital information in case you are unable to.  I have this on my phone for both my mother and myself.    I have found that I can actually email the information to the doctor/clinic, and they have the right scrip to decrypt it, and they have the information right there!
     Providence also has MyChart app, which they can walk you through to access your medical records, chat with your doctor, view and make appointments, see test results, etc.  This is also available on the web as well.
      These may seem to be a little annoying to deal with, at first, but believe me, it makes accessing Mom's information quick and easy for me, when I need it.  I can also keep it updated.

2.  Legal Stuff:
     Do you have your Powers-of-Attorney ready?  These include Durable and Medical.  These are, perhaps, the two most important documents you should have.  I don't care how young you are, or how immortal you believe you are; they are vital.  Without them, you could create a maelstrom of chaos for those around you, and decisions will be made, perhaps against your hopes.
       Mom had these done a few years ago, luckily.  She sent copies to the parties involved, and when they were necessary, they came out and were used (and still are!).  She also related her wishes to those on the medical, ensuring those parties communicated.  She chose me (Lord knows why), and her very close friend, Nadya (because I was 250 miles away, and if something immediate needed doing, then Nadya could easily determine action per Mom's earlier directives).
      Mom's Durable has more than one party mentioned in case any of those parties couldn't fulfill the duties for whatever reason.  This helps in paying her bills and being her advocate.
     Luckily (or not), the responsibility has fallen on my shoulders to advocate for her on nearly every level.   I am her caretaker outside of St. A's, as well as the contact for them in case something needs reporting or doing.   I do have another brother who lives out-of-town who is also on the Durable, but his ability to take the actions would be too difficult as he's too far away.

Have you also made your Living Will? or Living Trust?  These are also vital - just in case.  You don't want to have your family bickering about your end-of-life wishes.

Then, there is the matter of your will.  Be sure to have this done as soon as you are able, no matter what.  You don't want to see your 'peeps' begin to foam and froth at the mouth over your things - and those things you cherish being tossed out or broken in a custody fight!

AT this time, These are the Things I Believe Require the Most Immediate Attention.  Believe me when I tell you you never know what's coming up around that bend in your life!

Here are some sites that can assist you in making these decisions:

Advance Directives        Advance Directive Basics         Final Wishes - Directive

What is a Power of Attorney?    Legal Matters including Guardianship & Estate Planning

The above are links from the National Caregivers Library.  This should give you a good idea of some things you should be looking into.

You should also meet with an attorney who specializes in Estate Planning, and if you're dealing with an elderly parent or relative, you should also be sure your attorney is fluent in Elder Law, as well.  The attorney should be able to guide you and help you make the right determinations.  Of course, this may carry a cost, but it's a fraction of what it will cost in time, energy, relationships, and money - not to mention quality of care for the loved one.

I look forward to finding more sources for you, as well.

The Progression of LBD as it is with Mom

Lewy Body Dementia is said to be the Second Most Common Form of Dementia, after Alzheimer's.   It has been said that there are many who are misdiagnosed as having AD rather than LBD, as so many still regard it as the same sort of dementia, but with a few irregularities.  But they're wrong.

This week was quite a busy one for Mom.  After Sunday, she had a one-day reprieve from my attentions.  Lucky gal!

Tuesday, my nephew, Alex, came to town for a visit - mostly to see Mom, or as the grandchildren call her, Mermi (May-ar-mee - accent on the May).    I picked him up downtown when he arrived, and after lunch and some catching up we went in to see the matriarch.

She was excited!  She hadn't remembered Alex and was eager to hear more about him, his sisters and brother and his mom, who'd been divorced from Alex's father, my brother, for nearly 20 years.  They had a wonderful conversation.

 Mom had a wonderful time showing off her letters, cards and photos she'd received from friends and family.  Alex was full of questions, and Mom was raring to answer them - even if her responses didn't make sense; Alex was having a wonderful time, as was Mother.   While playing observer, I was able to notice that the tremors were quite noticeable in Mom's arms - perhaps it was the excitement, or they had just increased.  Later I would note that they weren't quite as noticeable, so it was something that happened sporadically.

After this, we decided Mom needed to get out for a bit.  So we headed for Mount Tabor, as the rain had ceased and it was becoming quite a lovely day.

Mom's repetition of questions was evident.  Was it the excitement of someone new?  I believe not, as my other brother had reported that during his visit this was quite common - she would ask the same question over and over as if it were the first time, and happily they obliged her with an answer as if it were, as did Alex.

After the goodly walk, we returned to the car, and Mom was a little tired, but not sore.  When we left her with the promise of returning the next day she was happy and she was going to lie down before dinner.

Wednesday came the visit to the dentist, Dr. Brad.  This went quite well. We both had cleanings and finished about the same time.   We then picked Alex up from Powell's Books in Cedar Hills, and went to lunch, during which we had a repeat of the conversation from the day before.  Mom was very happy.  She was getting so much attention!

After we returned to St. A's, we had just left her room when the RLC (Retired Ladies' Club - Connie & Jean Chapter) arrived.  We chatted a bit before they went to visit and play Scrabble (they playing by the rules, Mom playing kamakaze-style).

Thursday was the visit to the doctors (see blog entry for July 24) .

Friday night, I received the results from the tests.  I wasn't sure what they meant, but at least I had something...

Sunday night my brother had Mom, my niece from Las Vegas and her toddler, and me over for dinner.  I asked my step-niece what the results meant.  She told me that Mom probably needed to go on a diet with more lean meats, fruits and vegetables - all with less fatty substances.  After she explained what all the numbers and the initials of the different tests meant, I felt better - still somewhat ignorant, but better.

Mom was basking in the heat when I arrived to dinner, outside with my brother enjoying a glass of wine.  Today she seemed rather confused; it wasn't a 'with-it' day at all.  I believe all the activity with the toddler, and the other people, along with the heat probably made her feel a bit more anxious than usual - but then, again, she wasn't exactly completely in the here and now either earlier.

Mom thinks for a moment

As I took her home, later on, she slept most of the way.  She asked if her car was at my house, and I told her it was somewhere, but I wasn't all that sure.  She told me how nice it was my brother came and helped her move so many things from her house into his earlier in the day (never happened).  It was a pleasant chat.

By the time we arrived back to St. A's, she was quite drowsy, and the med-aid met her with the nightly dosages.  Mom was ready to sleep.

A very busy, but good week.  She can rest a few days, now.

What Does the Doc Say?

Quite a busy week for Mom!

However, today is the topic for this post.

We went to Providence to see a new doctor, this morning.  What a difference!

After filling in the paperwork, and Mom needing to review everything I wrote (talk about nerve wracking - she used to try to disagree with my writing down the diagnoses from previous doctors, but today she was mis-reading most of what was there...odd).

For once, she allowed herself to be weighed, as I told her I would wait down the hall and around the corner to provide her privacy.  Later, she confessed her weight.  I'm not telling, but she wasn't happy with the number.

Now, the primary issues we wanted to discuss with the doctor were her pain in her hips and legs, as well as the swelling in her legs.  But first, the doctor wanted to get to know Mom, and to determine the depth of her LBD diagnosis.  Her answers came all through the examination!

Mom exhibited a bit of her condition (mental) when the doctor asked her some questions.  When she asked Mom something Mom would respond, mostly from her imagination.  The doctor would then glance at me and I would be mouthing, "NO!" or "YES!" while moving my head in accordance with the response.  The doctor would make a note and was quite respectful with Mom.

She probed and prodded where Mom stated she was having pain.  Mom would exclaim her pain, but then moments later when the doctor re-probed the same spot Mom would state there was no real problem with that area.

The diagnosis for her pain in walking?  Arthritis.

Next, we addressed her swollen legs.  She concluded this was, indeed, Edema.  She printed out an article for me on Edema, which explained that the cause comes from Mom sitting too much, and the veins and their parts were collapsing.

Here are two articles that she provided me through Mom's online chart on Edema:
Peripheral Edema: Bilateral      and
Peripheral Edema: Unilateral

She prompted Mom to get some compression stockings - Mom was not happy.  She hates those!  However, we may need to make a trip to find some.  Also, she was told that she needed to do as much walking about as possible, and to keep her feet elevated when seated, as in when she is using her recliner.  Mom said she did that already - I've not seen it, but I'm not there all the time.  She also liked the idea of the massages.  She wanted those kept up.

She also addressed Mom's sleepiness during the day.  She prescribed Melatonin, and I stated I would bring a bottle by this weekend, but we needed doctors orders in order for them to administer it to her.  She gladly complied.

The next step was for her to draw blood.  They need to run the tests to see if the Edema is linked to her liver, heart, or kidneys.  So, the assistant came in and drew the blood.  Mom loved the attention, but wasn't keen on the stab of the needle - which was instantaneous.

She also stated that there was no reason, at this time, for Mom to be taking her Donepezil (Aricept), as that was showing no effect.  If it was working, we would notice within a couple of weeks.   She stated that it works for about 20% of the population, and that for Mom it may have been a stop-gap measure, insofar as to slow the progression of the LDB, however at this stage, it was apparent there wasn't the need any longer (this was a little sad).

About the Quetiapine (Seroquel), she noted that the dosage was low, and may need to be increased.  We will find out quite soon, I'm sure.

So, we have a doctor who actually cares and pays attention!  What a difference!  Before we left, they linked me up to their system via my phone, and explained how to do it at home on the computer.  Simple!  And it has so much information!  I'm so grateful!

So, next week, I hope, we will have a few more answers.    Also, I'm hoping to hear from the neurologist in the near future, and if we can get the two of them to provide some sort of coordinated care, then we'll be doing much better - and there will be peace of mind.

Below, I have added a corny video for anyone who enjoys Ylvis, and the parodies on "What Does the Fox Say?"  This is for those who have a good sense of humor - especially those who have worked in the hospital environment.  Enjoy or ignore.

I'll be back around Sunday, with the week-in-review for Mom! And pictures, too!  Whoo Hoo!

http://youtu.be/yeu1zUf7Qlk

What Does the Doc Say!? (#nurses)

Oh Time! Thou Art a Thief!

Please forgive the tardiness of this post - I had a moment on Friday, and it was rectified early this afternoon - I was without internet because of something mindless I'd done...ooooops!

Looking back at the year and comparing Mom today there is an easily observable difference.  She is less chatty; she moves with more difficulty;  she is less articulate; she has more hallucinations; she is wearier and needs more sleep; her appetite is diminished, and her wont of exerise is also down.

This week, I am taking her to see a new doctor, one who deals with geriatric problems.  This should be interesting to hear what happens.

Her appointment is a response to her having a great deal of pain in her legs - they have swollen, and I fear either she has an infection, edema, or something related to her condition.   She has complained of pain in her pelvic region, and this also may be affecting her condition at this time, or it is a symptom.

Also, her grandchild, Alex, is coming down from Seattle for a visit.  This will be the first time in quite a while they'll have seen one another.  It will be good for them both, I'm sure.

On Wednesday, aside from the RLC (Retired Ladies' Club - this chapter has Connie & Jean) coming to invigorate Mom's mind with Scrabble, she will also have a teeth cleaning!

What a busy week!

This past weekend, my brother came down with his wife from Seattle and took her to lunch and then on a shopping spree!  Mom is now rich with lots of comfortable clothes - whether she wears them we'll see  - she seems to crave only certain clothes, and doesn't want much to do with the others, but hopefully this will change!

She doesn't remember much about the week, but I did see a pack of Fig Newtons in her cupboard, which meant she must have won at BINGO!

WE had a lovely lunch on a cooler Sunday with Jean.   Mom spent some time going through the church registry to see if there was anyone she knew.  We also talked about books, and Mom was engaged, but not much verbally.  She did say she'd received a book list from a friend in Port Angeles, and was hoping to read some of them.  I need to get a copy of that list to purchase the books for her.

Oddly, she wanted to get back to lie down after lunch.   So, we went back and we went through the new wardrobe - her seated and me showing her and explaining each garment...some 'foundation' garments needed no display.

I left her happy but very tired.  I'm hoping that Thursday's visit to the doc will provide us more information and see a rally back to some vim and vigor she seems to have lost of late!

Little Things Learnt Along the Way - Like What They're Finding Can Help With Dementia - You'd Be Surprised!

A couple of years ago, I attended a seminar at OHSU on sleep and the brain.  Now, perhaps this doesn't intrigue you, but what the lecturer had to say did surprise me.

First, he stated that having a cup of coffee in the morning, when you first wake up, was a wonderful stimulant to the brain - and, he said that having a donut along with that coffee did wonderful things to get your brain working.  The third component, which many took issue with, was that a cigarette (only one, mind you) along with this 'breakfast' would also provide more stimulation, and help your brain begin the day in a most productive manner.

"Well," you say, "What has that to do with Dementia?!"

Well, after reading many blog posts, and from information I decided to look up, I found that coffee actually helps dementia patients function better, cognitively.

"Uh huh," you snort, "Riiiiiight!"

Well, let's take a gander at a report from the National Center for Biomedical  Information.  The study looked at mice, and realized there were significant positive effects from the consumption of caffeine.  As a matter of fact, a daily dose of 5 cups of coffee, they state, could prevent or help treat AD patients!  Isn't that interesting?

As a note, I know Mom has fewer than 3 cups per day.  She just doesn't want any more - however, on Sundays, she gets another two, but I'm guessing at the 3 earlier, as I do not have breakfast with her.   She does have a spark, though, right after breakfast - perhaps that's the presentation mode, and the fact she's excited she gets out to do something different!

"So?" you remark, "That is interesting, but you can't just force-feed people coffee."

That's true.  But the studies on caffeine are actually interesting, when they also bring in diabetes, cholesterol, and other factors.  But today, we're just going to worry about the dementia and what they're finding in some areas.

"What about tea?"

They aren't so sure about tea.  Even though I've read that tea has more caffeine, there doesn't seem to be a correlation there.  There is more to coffee than just the caffeine.

But Chocolate, now, they're finding that the caffeine and anti-oxidants in chocolate also demonstrate some good effects!  In a Harvard study, it was found that the anti-oxidants from drinking 2 cups (no more) a day, of dark cocoa, helped improve memory and cognition!  But be careful, as drinking too much could impair the brain from too many calories!

"So, you're saying I should drink 5 cups of coffee a day, and add in 2 cups of dark hot cocoa, to help keep my mind sharp?"

I'm not telling you to do anything of the sort!  You're jumping the gun here - although I understand why.  I'm simply relating some of the information that you might find intriguing - so that, perhaps, someday down the road of life, you might want to investigate a little and see if these help your head function a bit better.

<sigh> "Oh...I was hoping I could use you as an excuse."

Nope!

BUT - here's something that may shock you!  Dare I say it?!  Marijuana!  Cannabis!

"DUDE!"

Stop Drooling!  And stop making those crazy eyes!

"Are you going to tell me smoking a doobie can do something for me?"

Um, well......

Going back to the lecturer at the Brain Seminar, he did say that they found that one puff of a marijuana cigarette actually helped cognition levels in people who were demonstrating symptoms of dementia!

"So you're going to get your mom high?  This I've got to see!"

NO!  Now stop that!

I did a little digging.  and to keep this post brief, I will bring up an Australian study that dealt with mice and cannibidiol.  

"What's that?"

It's one of the active ingredients of marijuana.  It's an anti-oxidant and an anti-inflammatory that showed remarkable results when injected into the mice who were showing preliminary AD symptoms.  But the study is still ongoing and the results aren't definite at this time.

"You can inject weed?"

No, you goose!  Cannibidiol is one of the active ingredients and is not associated with THC, which provides the psychotropic effects of marijuana.  I'll keep my eye on this study, and others, and see what they find, though, for you.

"Duuuuuude! You're taking the fun out of it!"

Good.

Now, most of the above studies are illustrative of what I've read of late.  I cannot guarantee any of these to be a cure, but it sure is interesting, isn't it?

A Very Full Sunday

Well.  Today was a very long day for Mom!

I picked her up around 930, and, believe it or not, she actually made ready pretty darn quickly!  We packed her bathing suit and cap, and a pair of sandals, to boot,  as the weather was going to be in the 90's, and she was going to my brother's house for dinner (he has a very nice swimming pool).

Well, guess what?!  The weatherman's forecast didn't hold water - because it dripped on us all day!  With thunder, no less.  The temps didn't get above 73!!

Oh well...we tried.

So, Mass went well, and Mom was in a pretty good mood.  We left and went to Jean's house, where we were met by Connie and Jean's son, Terry.  We arrived early as Father decided not to sermonize as long as usual...probably had something to do with the directive to contemplate over the message...

Well, usually, when we get to Jean's, we spend some time just chatting about this and that...Well, Jean decided we needed to start eating earlier than usual...So, I jumped in and fixed the nachos for us all, and Terry had shown up with doughnuts...<sigh>  Yay!

WE ate.  Mom couldn't finish hers, but kept picking at them after she said she was full.  Hmmmm.  We had a very enjoyable time, and some had doughnuts...Thanks Terry!

It had been arranged that I would bring Mom over to my brother's house around 2ish.  Well, Mom was all ready to leave about 12ish.  Nope.  That wouldn't do.  So, we stalled her. And we stalled her...It wasn't very easy.  But we did it.

No, she didn't want ice cream.  No, she couldn't eat another bite - WAIT!!!  She DIDN'T want Ice Cream??????? Something is wrong!!!

Mom, Jean, Connie, and Terry have a lively chat over nachos.

Just a side note - This morning I noticed that Mom's tremors were more pronounced, and she seemed to be having troubles keeping a thought (let alone more) together.  She seemed frail, but on the face she was raring to go. 

She asked me whether her mother was in Michigan or Ohio or someplace like that.  I told her yes, she was.
   "When is she coming back?"
   "In a month or two."
    "Why is she staying away so long?"
    "She's catching up with friends she's lost touch with through the years."
    "Oh."
Of course, we know my grandmother died 30 years ago last April.  But, this seemed to work, and Mom moved on.

We left the jovial conviviality of Jean's house when her one of her other sons, Tim, arrived to greet Mom.  They had a short but pleasant chat, and then we left.

Where to go?  The weather was rather wet and cool....Well, I needed gas, so I suppose we should go to CostCo!

WE did.  We bought gas, and then went shopping.
We looked at the clothes.  Mom seemed a bit too interested in the stretch jeans and other lycra-type products.  I told her they would mold to her shape, and there would be little left to the imagination - that was enough for her.   So we picked out two shirts whose colors she appreciated.

WE bought oranges, and she picked out two bottles of wine for herself, and then went to sit down as her back was hurting.  I raced through the aisles - getting boxes of Hershey Bars with Almonds, Dried Cherries, Dried BlueBerries, and  Chocolate Covered Almonds, and a 1.5 caset of Diet Pepsi.   I want to say there was more...

We left CostCo, and I phoned my brother from the car - he was home and ready for her.  So I drove her over and left her in his care for about 3.5 hours..

Upon my return, they were having a lovely time, watching "A Little Princess" with Shirley Temple.  Mom talked about her Shirley Temple Doll, and how her mother used to buy her the same types of dresses, or make them for the doll and her.  She talked about how the other kids used to say she looked a great deal like Ms. Temple, as well.

Eventually the sun came out, but Mom wasn't in the mood for swimming - a huge change for her.

My brother barbequed ribs, and we had a wonderful dinner.  Mom was quite happy.  After, she went to lie down in the guest room.

Mom enjoys conversation at the brother's house...

My brother and I went outside to have a chat and to catch up.

Eventually, Mom arose and we had to get going.  It was after 8 pm, and I had told St. A's she would be back by then.  Ooops!

She began asking my brother about some furniture she'd seen in his house while she was wandering about (did I ever mention she was a real snoop looooooong before she began having troubles?).  She asked him, but didn't seem to know how to ask to get the answer she wanted. Another reason she still can't come to my house!!!

WE had a great chat on the way home.  I asked her:
"What three things did you find the most enjoyable today?"
  "Oh, I don't know.  I guess making my bed."
   "Really?  Making your bed?"  She laughed  when I said this. "Okay, give me another one - maybe one you don't do every day."
  She thought for a moment.  "Jean's. I had a very good time at Jean's."  Whew.  I half expected brushing her teeth!  This made me happy.
   "And thirdly?"
   "I don't know...."
   "What about dinner with my brother, your son?"
   "Oh, That's right!  That was a very nice time, too.  He's such a nice man with common sense!"
   "I'm sure he'll be thrilled to know you said that!"

Thus ended the week.  This week included a wonderful visit with Jean and Connie and a rousing game of Scrabble.

Connie and Mom in the Gazebo pondering words and/or rules...

It also included BINGO, where Mom won a pack of Fig Newtons!   She seems so pleased with that.

Perhaps with Dementia one begins to actually appreciate the simpler things....and that's not a terribly bad thing at all.  Perhaps Dementia is remembering what we're all grateful for, without realizing it.  That takes some of the sting out of it, doesn't it?!

Mom says, "Good Night!"

The Stigmas of Shame and Dementia

Looking back over the years I remember, all too vividly, Mom's dealings with our grandmother's Alzheimer's and decline.

It wasn't until late August or September of 1983 that they received a diagnosis of Alzheimer's, and my grandmother passed April 4, 1984, from congestive heart failure which was attributed, at that time, to the AD.

Not much was known about AD at the time, and we do know more about LBD, PDD, and AD now, but the former two are still not thought of, by the public at large, as real diagnoses.  However, they are different, yet are still progressive and lead to death.

After our grandmother died, Mom kept a handle on the Alzheimer's diagnosis.  She didn't want people to think there was anything wrong with our family, as she was under the perception it could be inherited, and it would question mental processes within our gene group.

Many years later, Mother was furious with me after she had begun to demonstrate symptoms of decline, when she discovered I had stated that our grandmother had had AD.  Mom was quite selective about what she told the doctors, and this was one item that she wanted kept out of the records.

Now, why would anyone have a problem with this?

I recall when cancer was seen as something shameful, but I attribute that to no one truly understanding it, and that some believed it could be contagious.  Today, some still avoid needing to deal with the affliction and keep their distance, but it's not because they're afraid of catching it;  rather it's because they aren't sure how to deal.


Dementia, in some ways, is very much the same, I'm thinking.  People are frightened by what they don't necessarily understand.  It's also a frightening reality that it is something that could sneak up on any of us once we reach a certain stage in life, and this is not how the majority view spending their golden years; I know it's not anything close to what Mom envisioned.

Mom had been quite active.  She played pickleball, she went hiking 2-3 times a week, she always took walks around the neighborhood, if only to clear her head and think.  She participated in bridge clubs, Bible study, book groups, and went to lectures on various topics at the community college and for various lecture series.

She read like a demon.  She loved reading books on politics, biographies, and novels that opened her world to something wonderful (she didn't much care for silly romance novels, or mysteries).  She was on a mission to learn as much as she could.

Then it stopped.

Her friends (the real ones) were concerned, and still stay in touch with her.  Others who weren't terribly close but still cared for her do check in occasionally.  But there are those with whom she socialized who haven't even peeped.  Why?

Because:  1)  Life goes on.  People move, pass on to the other world, but we still live in our fishbowls and time robs us of the need to seek those who aren't present.  2)  Dementia is something that we don't completely comprehend, and we aren't truly sure how to address it.  We live in a culture where we don't look for context or content, but for the immediate gut reaction to something someone says or does;  thereby we decide not to spend the time or energy with anything that takes us out of our comfort zone.

Oddly I know many who preach empathy and compassion, and yet they never seem to look into themselves to make it a virtue unto their beings.

In doing my research for this post, I found many articles and studies about the cultural stigma of dementia wherein the stigma of it being a mental illness and lacking in research and funding create an aura of shame, depression, guilt-by-association, and other attributes.

Perhaps it's the Mental Illness component that people respond to.

For the patients, there is a great deal of shame and depression that occurs in knowing they are declining.  They are lost and cannot do much about it.   They can't reach out and communicate or go about their daily duties as they were once able.

Picture this, you're walking down the street and some person walks up to you and begins jabbering nonsense.   What do you do?  Do you take the time to figure out what they're really trying to say?  Do you attempt to help them?  I'll have to say, "No."  Because we are frightened and aren't sure what this person is going to do to us - if they're going to be violent, or if they will be something burdensome on our regular insulated lives?  I'm just as guilty as the next person.

However, when it comes to our friends, relatives, parents, siblings, or people we've known and trusted for years, why would this be the case?  We know how they are, react, think, are motivated.  If my neighbor began showing signs of decline, I would, most likely, find a way to help them - either through their family, community support, or something (I feel as though I'm walking a plank here) that would open the doors to find help for them.

The purpose of this post is to ask people to think.

I see the residents of Mom's cottage and wonder who visits them.  I speak with some of them, and I watch them interact - such as the two ladies who were carrying chairs to block the hallway to the medroom.  I thought it rather brilliant they could be so rambunctious!  I laughed, but declined when they asked me to join in.

Many of these people are depressed, and have no one but each other.  Perhaps they weren't the nicest people before they declined, and sometimes that has created a strain.  Or, they may have children who live elsewhere and/or have families that take their time.

Just remember, how you present to your elders (parents, relatives, friends, or others) teaches the next generation how to take care of you.  And there is no shame required.

What To Say.....

Today was a bright and warm day.  Temperatures were in the upper 80's, and the skies were blue.

Traffic was a little thicker than normal this morning - people heading home after the 4th, so I was bit tardy in fetching Mother from her residence, but still in good enough time to have her to church on time - but the variable was with her.

She was doing her crosswords in the Sunday Oregonian when I found her in the dining room.  She seemed glad to see me.  I attempted to motivate her, but she is growing more and more apathetic toward time;  perhaps it's the nature of the beast wherein she is accustomed to not having any real schedule to follow, except meals.  I was the only one, at this time, who was there to visit - typical - the others usually come later in the day, if at all, to visit the other residents.

Mom made the request that I phone Dad (remember he's been gone for 19 years the 13th of this month) to make an eye doctor appointment.  I reminded her she'd had two cataract surgeries earlier and she balked.

"Those were not surgeries - they were done by a dime store hack!  I want a real professional!"

I took a deep breath and sighed.  I asked her what else she needed to speak to Dad about.

"They're personal.  I need to see a doctor about some personal things - even if you have to call that ---  can't remember her name."

"Dr. B___?" I asked.

"Yes, her!"

That's when I noticed her ankles were swollen as were her feet.  "What happened to your ankles?"

"Oh that - it happens from time to time.  That's one reason I need to see the doctor.  I think it's my leg acting up."

One ankle I would attribute to her bad leg, but not both.  It made me begin to think she was showing signs of edema, but I can't be sure.  So, that's one call I need to put in this week.

Then we couldn't find her watch.  We found it in her breast pocket of the shirt she was wearing.

I found an orange in a drawer.  "What's this doing here?  It's going to go bad!"

"No.  Put that back.  I have to hide my oranges because people keep coming in and stealing them!  You bought me a lot last week, and now they're going quickly!  I had to take them all out of the refrigerator and hide them."  This I put to paranoia, as I know she offers them to her friends, staff she likes, and she eats them, as well - it's the remembering she does this that's the problem.

Finally we left - 5 minutes after Mass had already begun.  But, all things happen in time.

She was very quiet on the drive.  She'd looked at the trees (she seems to be amazed at how large the trees are on Cesar Chavez are, as well as in Irvington) and make a few comments.  I tried to engage her in conversation but that was in vain.

We found a fortuitous parking space across the street from church.  We went in and participated.

After we went to Jean's house for some Nachos, coffee and conversation.   She was much more engaged at this point.  She regaled us with the stories of how her grandfather was asked by the Pope to come to Walla Walla, again.  Now that I've explained the real story (sans Pope) everyone just listened.

Then she explained how her brother had fallen and the damage to his leg was what had done him in.  Everyone knew he had Parkinson's, which led to PDD and then it seemed he suffered from some cancer, which took him as toll.

After she was full, and a good conversation with Terry, Jada and Jean, she was offered ice cream.  Now, after complaining about how terribly full she was her eyes danced.  This was her heroin!  Of course she'd have a bowl!  Jean gladly proffered it to her and Mom relished every bite.

As we stood to leave, Mom felt some pain in her pelvic bone.  She said this had been nagging at her for some time (first I heard of it, and she usually tells me everything).  It was then I realized she'd been wobbly on her feet and holding on to me more than usual all morning - she'd said it was nausea, but this was different from the other times she complained about this.

So, we left out gracious hostess and headed out.  She thought a goodly walk around Laurelhurst Park would do her some good, but there wasn't any parking, and the traffic around the park was thick.  So we tossed that idea, even when I did see a spot, but it was in a hilly section and I wasn't sure it would have been wise given her pain.  I would have wanted a flatter surface so there wouldn't have been an up and downhill struggle.

We went to Safeway, as she stated she hadn't had any chocolate for such a very long time.  I reminded her that only last week I had bought her several large bars (you know, the gigantic size).  She told me I had a vivid imagination and I hadn't been thoughtful enough to actually buy them for her.  Hmmmmm.

So, in we went, and I made her walk the perimeter of the store in search of the candy section.  Her movement improved as we went, and I told her if she liked, we could walk through the neighborhood when we returned to St. A's.

I bought her about 25 candy bars.  I put them in her freezer.  She didn't want to walk - just rest and nap.

She reminded me again to phone Dad for her, and I kissed her on the top of her head, told her I loved her, and that I would see about visiting her for an outing later in the week.  She gave a weak smile and told me she loved me, too.

I then left, wondering if this was an off day, or if this was a sign of things to come.  

The Differences Between AD, LBD and PDD - Part II - in a nutshell

So, last month, I spoke of the Amyloids, plaques, and the Lewy Bodies in their parts of the brain, which helps tell what form of dementia the afflicted has.

Now, do understand, as well, that the best diagnosis made is one that is "Probable".  They cannot diagnose definitively until autopsy, as the neurologist stated.  This is understood.  And, with the high cost of the SPECT, PET, and other imaging processes, this is just not doable unless, of course, Mother and her peers who suffer from the affliction, had a great deal of money (a lottery winner might have enough).  So, we do what we can.

Now, back to the plaques which affect parts of the brain.  According to the NIH, plaques are a normal part of the aging process.  They still aren't completely sure how they work, but they do know that people with AD seem to have quite a few.

The plaques come down and live outside the membrane of the brain cell.  They normally would be fought off (from my understanding of the literature), but with AD and dementia, they seem to cleave in and take hold, never quite letting go.  This is due to the enzymes which are involved.

from www.nia.nih.gov (Alzheimer's Disease: Unraveling the Mystery)

One form of enzyme that takes hold is benign.  With AD, the enzymes are not.  In fact, they begin to clump together and resist the cells "fighters" to send them thither and yon.  Once they take hold, there are others that come down and clump with them;  the proteins that make up a goodly part of these are misfolded, and are not benign.

                                        from www.nia.nih.gov (Alzheimer's Disease: Unraveling the Mystery)

There are also the Tangles.  These tangles are made up of the Tau Protein, which is inside the cell.  Normally, there are a certain number of these Tau Proteins which are attached to microtubles.  On these Tau's, there are attached a certain number of Phosphate Molecules, and thus the cell is able to function.  With AD, though, there are a more unseemly number of the Phosphate Molecules that attach themselves, and tangle the strands of Tau and the microtubles, which lead to the cell's death from the inside.

And then, with AD, there is the death of the cell, and the loss of communication between the cells. This comes, as I understand, from the above reasons.
For more about this, I suggest you visit:  Alzheimer's Disease:  Unraveling the Mystery.  This is  a very interesting, but technical insight into the causes of the disease.

                                                                    loss of connectivity between cells 

                                              from www.nia.nih.gov (Alzheimer's Disease: Unraveling the Mystery)

What has this to do with Lewy Body? Well, as I mentioned in the earlier blog (Part One), on a scale, from which Alzheimer's Dementia (AD) is on one end of the specturm, and Parkinson's Disease Dementia (PDD) is at the other, Lewy Body Dementia (LBD) is somewhere in the middle - thereby demonstrating symptoms that have elements of both AD and PDD, as well as some Parkinsonian Disease, in tremors, movement, etc.   So, it wouldn't be wrong to state that Mother possibly has some of these plaques and tangles killing off cells and neurons in her brain (nor would it be wrong to state this happens in other elderly people, either, as it is somewhat common, but not as rapid-paced as it is with those afflicted with either of the two dementias).

Now, interestingly, the Amyloid-Plaques are very vivid on the molecular imaging with LBD, as well as with AD.   Interesting, isn't it?!

Now, with PDD and LBD, though, the cortical amyloid plaques affecting cognition and movement can be detected and monitored (remember it's expensive - so if you're not part of a study, you'd better have saved) using some experimental treatements  (Discover MI.org.  2012).

Let's move on now, to Acetylcholine.

1. a compound that occurs throughout the nervous system, in which it functions as a neurotransmitter.

 This is a neurotransmitter which is shown to diminish with more extensive and rapidity  with PD and LBD, to a somewhat different extent than with AD.  Why?  I'm not quite understanding it myself.   But the acetylcholine loss is in the 15-30% range on average for both these dementias. These dysfunctions appear at the same rate early on, which accounts for Mom's problems in the recent past, and her needing to be where she is.

In the next addition to this portion of the blog (Part III), I will write more on the Cholinergic loss, and it's detriment to balance and movement.

Here, I would like to bring out some resources that are very informative:

A webinar on Molecular Imaging and the Spectrum of AD, LBD, and PDD

The National Institute on Aging:  Resources for Lewy Body Dementia.  Here you will find an online copy of the book about LBD, which Jean, Mom's buddy, ordered several copies and passed them out to those who have an interest in the disease.  For those of my family, I have a few copies, as well, and if you ask, I will hand them to you - otherwise, you may call and request free copies for yourselves and others.

The Lewy Body Dementia Association has a marvelous site with all sorts of information and news.

There is also the Alzheimer's Reading Room, which is run by a guy named Bob DeMarco.  He brings in several interesting articles about dementia.  He began when his mother was diagnosed with AD, and he has continued writing on all sorts of interesting items while he cares for her (she's 93).  It's truly awe-inspiring when you realize just how much effort and work he's put into his work.  There's even a search bar which is very helpful!


There are many other sites.  I do, myself, have the Lewy Body Dementia Support/Blog Page on Google+, on which I post, and so does Mr. DeMarco, and others.  I am hoping to have many others join us, as well.