Mom's Drugs & Medications - What's What with LBD....

If you recall, earlier, I wrote about trying to take Mom off Lorazepam 2-3 years ago, because it seemed as though this was the culprit of her "imaginings".   Part of the purpose of this blog entry is to help determine what drugs she's on, what drugs are out there to help, and to figure out if she could be on a better "cocktail".

Aside from the medications I'm listing below, Mom is also taking supplements for her eyes, trying to ward off Macular Degeneration.   Aside from her telling me she's ready for the next operation on her eyes, I believe those are doing their job!  And they're a little less expensive.
 

The following is a list of the medications for Mom, and their effects, as well as side effects, with possible editorials inserted as to how they seem to be working:

Donepezil  for Cognition -  This is another name for Aricept, a medication given routinely to those who suffer from AD.  Mom's doctor in Port Angeles explained to me that this may not have the intended effects on her, and through my research on LBD I have discovered it works for a short time, but is not a panacea.

The side effects are nausea, vomiting, incontinence, fainting, hallucinations (yes, this may sound ironic for Mom, but it does seem to be having the desired effect on her with few hallucinations), among others.

Hydroco/Apap 5-325 for Pain -  This is given for the pain Mom has been experiencing in her arms, shoulders, and side.  Of course, through my reading, I'm discovering this is a common malaise for those with LBD as the affliction begins to stiffen the muscles from the shoulders down.  Mom takes this to ease the pain, and this, with the help of the deep tissue massage every week, helps her mobility and ease of movement she would be without due to the pain.    However, there is a caution that there is a tolerance buildup that might occur.

The side effects are:  nausea, light-headedness, fainting, vomiting, confusion, lethargy, drowsiness, mental cloudiness, anxiety (oh, yay!  isn't that what a couple of her other drugs are for?), fear, dysphoria, and others.  This may explain her lack of energy - yet this was present long before she began taking this medication, so it may have had little or no effect on her, aside from the pain management.

Lisinopril for Blood Pressure -  This is a drug given to those who have had a heart attack, or suffer from high blood pressure.  I know the center takes Mom's blood pressure on a regular basis, and they don't hand this out unless there is an irregularity with her pressure - which gives me comfort.

Side effects for this drug are:  cough, dizziness, headache, weakness, diarrhea, nausea, runny nose, and others.

Is it me, or do most of these drugs seem to cause nausea, dizziness (light headedness), and other effects in common?  It's amazing she hasn't suffered from many of these!

Quetiapine for Anxiety/Agitation -  This is what they call a Black Box Drug!
     An example of a Black Box Drug Warning  :  The FDA requires a black box warning on all antidepressants because of an increased risk of suicidal thinking and behavior in young adults ages 18 to 24 during initial treatment - generally the first one to two months of therapy.

        This is prescribed to help Mom with her depression, but also with her hallucinations.  Reading up on this it states that it is not to be used on patients with dementia, but it has actually helped Mom a great deal.  She takes it in very small doses during the day, and it has decreased the number of hallucinatory episodes, made her a happier person, and overall seems to be working wonders.  

The side effects for this drug are:  Suicidal Tendencies (for the first two months - we're well over that), dizziness (again!), pains in the joints as well as neck and back, indigestion, excessive weight gain, among others.  

This was a drug I had to really think about before giving consent to the hospital when Mom was first admitted.  They wanted to test it out to see if there was a difference in Mom's moods or behavior with a very small dosage.  We had all the warnings.  At that point, though, we (my brother Tom and I) decided it was worth a go.  Actually, I'm glad we did, as it seems to have swung her mood from angry and confused to a more genteel mode.

Also, in doing more digging, I've noted that it is listed (not by name but by drug type) as a treatment by the Lewy Body Dementia Organization, which eases my mind.  Perhaps as LBD research grows and matures this will help others in the future (using it with patients like Mom).  

Lorazepam for Anxiety - This is the drug I called into question a few years ago.  It reduces anxiety by slowing brain activity to provide relaxation.

At first blush, I'm still not sold on this drug, but since Mom has been  on it (there was a time she was on St. John's Wort, and she didn't like it as it didn't have the desired effect or feel she wanted) and with the combinations of the other drugs it seems to be working.

Side effects for this drug are: drowsiness, dizziness, dry mouth, weakness, tiredness, changes in appetite, etc.
I suppose I should trust the doctors, as they keep following the same prescriptions as the placement before them.   But I'm still on the lookout!  I do know drugs like Haderol would do awful damage for her condition, while helping those with AD.  I've read some stories where the doctors prescribed this and many of the patients were not able to recover from the effects of the drug.  So, I'm aware we're not going down that road!

There is also the chance of using Levodopa, which is prescribed for Parkinson's and helps with the movement.

As time progresses, so will the treatments and the drugs.  It's odd knowing that in the future there will be more available treatments for LBD, but for now we need to accept what is there; it's nearly as if we are in the 19th century looking ahead to when medicine will be able to help and cure such malaises.  <sigh>

the Week Ending April 27, 2014

This was a week of ups and downs.  In fact, the weather has been that way for most of the week, as well!

Mom had her hair permed & cut, she had a mani-pedi, and Barbara, her Beautician, put nail strengthener on her nails - apparently this needs to be done once a week.  Mom has thin nails, and I'm not sure what this means, but she does (no, she doesn't have heart problems).

She had a pleasant visit with her friends, Connie and Jean while she was being permed and primped, while outside the rain raged on to provide us with fragrant flowers and springtime.

Mom received some cards and more letters, which always excite her - she loves sharing the photos and the missives with family and friends.

Mom with Barbara Day in the Salon at St. A's.

Her friend, Nadya, was admitted to Swedish Hospital in Seattle this week for a surgery.  Mom was quite worried about this.  Luckily, her other friend, Phyllis, let us know that Nadya was coming back to Port Angeles, so this is good news both for Nadya and Mom!  It will also allow Mom to relax a bit more.  She received a card from Nadya and grew misty-eyed after reading it - "She's the closest friend I've ever had, you know.  I'd hate it if something happened to her!"

I discovered that later in the week, one of the residents in Mom's cottage had passed.  The cottage was her hospice care, and she could hold out no longer.  Mom used to help the resident in dressing, and just figuring out where she was.    The staff had tried to clear everyone out of the main area because her room was off the great room.  Everyone moved to the television area on the other side of the cottage - everyone but Mom.

Mom refused to leave.  In fact I was told she engaged them in a power struggle.  Finally, they relented.  She was quite upset by what she saw - in that someone had died.  It aroused in her more determination to leave and move out before she was next!  Luckily I was able to engage her in other titbits of conversation and she forgot - except now my brother, Lawrence, and my uncle, Larry, are both dead again (Lawrence is still alive).   This was the stormy weather section of the day.

Today, we went to Mass at the Madeleine and after we went to Jean's house for lunch.  I made soup (canned) and toasted cheese on sourdough - although Jean didn't join us - she ate breakie late.   Her daughter, Jenny, and Jenny's husband, Aldo, were there, as well, so we were able to have some very good conversation.  Then Jenny and Aldo left, and we discussed books with Jean.  Then we left.    At this time, the weather was bright and clear!

I gave her her medications, which I'm beginning to understand a bit more now (see this coming Wednesday's blog on Medications).

We had also driven around the Irvington neighborhood looking at the gardens and homes.  I saw one garden that I felt was a piece of art.  Mom said, "It looks like an overdressed woman!  Too much for too little effect!  Cheap!"  I saw rays of sunshine creeping in to her soul.

We went to Fred Meyer's and bought Mom toothpaste, cuties (bagged little oranges she devours like candy), and a couple of Hershey Almond bars.  Mom was in heaven!

We returned after looking at so many gardens, flowers and trees in the area.    She wanted to continue driving (anything but return to St. A's, I guess).  And then she saw we were going back. She looked at me and said, "You know, I guess this is kind of home to me right now.  I don't like to think of it that way, but it is.  I just hope I don't die here."  A bittersweet statement to end the day.

As we walked up to the entry of the cottages, Mom noted the bright colors and contrasts on the Rhododendrons.  So, below is a picture of her with one of the bushes.  This gladdened her greatly.
Have a great week!  Until Wednesday!

When Did It Begin? How Would We Know? Examples and A Website For Similarities

Reading through the information has been quite interesting, and yet confusing.  It seems as though there are so many overlaps between the different forms of dementia, that it seems nearly impossible to tell one from the other.  Yet, in the earlier blogs there are distinctions that help the lay person begin to separate them from each other.

Knowing that it takes up to nearly 18 months to actually pin a diagnosis of LBD for someone doesn't help, but it made me wonder how the people in Tukwila were able to nail it for Mom so quickly (she was there a week).  With the medical records, observations, input from both myself, earlier doctors (in their reports), and having her observed in a geri-psych ward with specific tests, this was made much easier, and the diagnosis was an ongoing procedure, although we truly weren't aware (thank goodness for doctors being aware and taking accurate notes!).  

Mom's generation, as I've been told, has a tendency to keep problems of dementia under wraps.  Mom was adamant that no one (especially doctors) know about our grandmother's diagnosis of Alzheimers.  I let it slip with one doctor, and then again with another - Mom found out about the first slip and let me have it!   I do sense she was afraid it was genetic and anything that could be thought out of the ordinary for her would be assumed to toss her into that category.  This I understand.  

During my research and reading, I happened upon a website entitled Lewy Body Journal:  Our Families Experience with Lewy Body Disease.  This is a  site written by a family whose mother was afflicted.  It takes you through the stages and their trials and observations of her downturn.  There are sections that are a little difficult to get through - emotionally.  There are parts that reflect many of the symptoms of Mom, as well.  

I had been thinking about Mom's Balance.  I believe in an earlier post I talked about Mom and her Captain Klutz behavior.  She had fallen a few times.  Once she fell (on the ice) on the way out to the mailbox, and this did some very painful damage to her hip.  I bought her  YakTrax to help her on slippery surfaces.  She never used them.  After 3 years, they were still in their package in a closet.  She had another pair, as well, which she never used. 

These are YakTrax on the bottom of some boots - Not Mom's.  Just an image I found to illustrate.

She also fell while walking around the neighborhood.  She cut her face up, and there were scrapes on her hands, arms and legs.  I really thought nothing of this, except she needed to be more aware of her surroundings (Capt Klutz returns?).

Then, in July of 2012, she phoned me.  She was very worried.  She had gone for a short walk, and before she was able to make it to the end of the block (she lived mid-block) in the alley, she tensed up, couldn't catch her breath, and felt quite dizzy.  I told her to call the ambulance, but she declined and told me she was going to take a nap and see how she felt (I wasn't sure if this was going to be her last call with me or not - but I had planned on going up in the next few days).  She phoned later and told me she was fine.  

I drove up to see her later that week and she said she hadn't had another incident.  I still phoned her doctor and the nurse asked if she'd had another instance.  I told her she hadn't, and she said there was then no reason to see her at this time.  I wasn't happy.  I told her we would then go to the ER.  She asked why.  I remarked that since she couldn't figure out that there was something odd that had happened with Mom, and didn't seem at all interested in helping us figure it out we'd just go it ourselves.  She made some snappy comment and I let her have it with both barrels.  A normal person on the other side of the line would probably have figured out that there was a problem and had made the appointment.  Her remark?  "I'm not understanding why you would go to the ER for something that happened only once."  I slammed down the phone.  I did call back and got the doctor.  She understood what was happening, and I explained my poor behavior, and apologized, but cautioned her about zombie nurse who hadn't a lick of empathy or common sense.  

Beautiful Port Angeles Below the Olympic Mountains

We went to the ER, they ran brain scans, and told me there was nothing wrong with Mom - I wanted all the tests for the heart, breathing, brain, etc.  I was told she was quite fit for an 82 year old, and she didn't show any signs of cognitive damage or decline that wasn't normal.  I was now very confused.  Was this something leading us to her death?

My brother and his wife sailed into town from their vacation (yes, they were actually sailing) and my nephew came in, as well.  WE had a chat with Mom about moving down to Portland.  She was non-plused.  She didn't seem very interested in what we had to say in our intervention. 

a sailboat in the Straits of Juan De Fuca between Vancouver Island, BC and Port Angeles, WA

The next day, she made no mention of the family conference, and we had a pleasant morning and a good lunch.  On the way home I asked my brother if he thought it odd she made no mention of the previous day.  He agreed.

That afternoon I phoned Mom to let her know I was home safely, and I asked her about the meeting.  She flew into a rage.  She wasn't happy about it and didn't like that we would dare to question her or try to force her to move.  I was content that she seemed to have her faculties intact.  

Later, this would lead to more confusion in her driving, her days, and other incidents that I've either mentioned before or will allude to later, which eventually led to her diagnosis.  

To be honest, Lewy Body is a disease that you don't necessarily look for, and normal things that you figure just happen become key aspects, in retrospect, of diagnosis and symptoms. 

If anyone reading this has any other resource they'd care to share, I would truly appreciate it!

Until next time!

The Week Ending Easter - April 20, 2014

Well, Mom has had a busy day!  Her mind has been working overtime which is good, and then again....

When I arrived in the morning to take her to Mass, she was doing her crosswords and happy to see me.  She made sure I sat down before she began her list of demands (not something I was prepared for)...

1.  She wanted me to phone my cousin as he knew how to move her furniture back to her house in Port Angeles.

2.  For me to call to have her pedicure asap!

3.  For me to give her my phone to call her friend, Phyllis, who had phoned the previous day but had left a cryptic message about her friend, Nadya.  She was very worried about Nadya.  I later spoke to Phyllis and discovered they'd had a brief conversation the day before.  Later Mom decided she didn't need to phone her again, which I'm sure was a disappointment to Phyllis.

She was quite displeased when I informed her that I had accidentally forgotten my phone at home (very true!).  She then instructed me to return home, fetch it, and bring it right back.  She was quite non-plused when I stated that would take approximately 1.5 hours (also true).

So, she went in to change for Easter Mass.

From there, things went fine.  I informed her that we were simply going to Mass, and then after she'd return to St. A's for lunch, and Lawrence would pick her up for dinner after she'd had a chance to rest.

This was difficult, as we had a routine and this threw her way off course.

She'd had a good week, though.  A rousing game of Scrabble, at least one Bible Study group with the folks in Residential Care - as she is not prone to dashing off, they allow her out to stimulate her mind (a very good thing - also the ability to interface with others in a social situation is also very good for her condition).

She didn't complain about her arch nemesis, a woman we shall call "Naomi".  Mom does not like Naomi.  Mom has nothing but deep dark thoughts about Naomi.  Usually, Mom goes on and on about how disgusting Naomi is.  Today, she had no idea who Naomi is.  I found this somewhat odd - but this is the affliction.

We had to park a few blocks away from The Madeleine, where we go on Sundays.  The church was packed, and Jean's granddaughter and son informed us there was room upstairs in the choir loft - so up we went!

Stairs tend to be a nervous thing for me with Mom.  In my youth I dubbed her Captain Klutz, as she was rather accident prone - so on the stairs, some of which are marble, I walked behind her in case something happened - and on the way down I walk ahead - better my still pliant skull take a smack than hers!  Luckily nothing happend.

We shopped for a birthday card for her brother - something that should have been sent weeks ago.  He had texted me to ask how she was as she had never ever missed his birthday.  Mom thought sending him the card would be a good idea.

I dropped her off, and she was out of sorts from the routine change.

When I next saw her for dinner she was in a great and festive mood.  My brother had taken her to Mt. Cavalry where Dad, her parents and grandparents are buried.   Yet, she still spoke of Dad in the present, which was a bit of struggle for her - but she did well.

She was in a great mood after dinner.  She told me how wonderful Kathleen and Larry were, and how lucky they were to find each other.   No more mentions of the furniture, just that she needed to get back to get to bed.

She seems to enjoy where she is - to a point.  She still talks about buying a new car (God forbid!), moving back to Port Angeles, and how wonderful the people up there are - as they continue to send flowers, cards, letters with photos to her on a regular basis.  She is gone from them, but hardly forgotten.  This means the world to her.  She breaks down at times when thinking about it.

About her having a phone....
    Some of Mom's friends from afar think she should have a phone.  I have considered this - even looked at some phones that are pay-as-you-go.  However, from past experience with Mom on my plan, I know how much she's able to run through in talk time, and this would prove a problem - especially with the frequent calls coming my way, as well as my brothers'.    So, once again I was advised against it - for my sanity and that of all close and dear.

So, there we have it.  I'm sure there will be more next week when I update her status.

Be sure to check in on the Lewy Body Syndrome/Dementia updates, as I learn more about the affliction, as you might find it interesting, informative, and useful (hopefully not in the near future).

Also, please visit the Lewy Body Dementia Support Page on Google+, and support it!

LBD - What are the Stages/Progressions?

Knowing Mom's condition has  a progression doesn't ease matters much.   But knowing what to expect does help in understanding what's actually taking place.

The only problem is that there is the tendency for the condition to morph - insofar as to become something known as "Mixed Dementia".

Mixed Dementia is quite common among the afflicted.  This is a condition where one might be diagnosed with one form (say, LBD), but also have symptoms and factors related to VCI (Vascular Dementia),  and/or AD (Alzheimers).  There lies a rub, however, for our purposes we will focus on what we know - LBD (or DLB - Lewy Body Dementia).

Earlier I've outlined many of the symptoms.  Today, I'm going to run through the possible/probable stages of the condition (I daren't say 'disease', as that sounds off-base and is a little deceptive).  There are no real stages - just the progression of the affliction.

Lewy Body Dementia and Dementia with Lewy Bodies affects men far more greatly than women.  Women are more affected by Alzheimer's than men.  I found this quite interesting. Don't you?!

Did you know that Lewy Body Dementia and Dementia with Lewy Bodies (LBD and DLB) are two different diagnoses?  I didn't.  In a future blog, I'll go into the differences, but today I would like to show the signs, progressions and symptoms of LBD, with which Mom was diagnosed.

Cognitive Decline - What used to be simple isn't any longer.  There are times when the patient is lost - not always literally, but mentally.  S/he becomes forgetful, or can't recall what they were doing, speaking about, or where they were going.  Many times there are word substitutions, which happens for many of us, from time to time, but more often for the LBD patient.

I remember a time when we were sitting out on the deck at the beach house, enjoying the day, and Mom was talking about a man she knew who, I believe she said, had something to do with 'prophylactics'.  My brother and I looked at each other and repeated her statement.  She agreed, then realized she made a mistake, and we corrected her with 'prosthetics'.  We thought it cute at the time, but then she stated another zinger, and we wondered if it was the wine, or that she was tired - but neither of us thought it had to do with mental decline.   I cannot recall how long ago this was, but I believe it was a sign.

Loneliness and Depression - Mom was speaking of being so lonely quite a bit of the time when I'd call.  I knew her doctor had put her on anti-depressants a few years ago, but she didn't like them, and decided not to take them - until I realized she was still taking them, despite her claim they didn't work.    This could have explained a few things.  But then she began calling over and over about the same things; not remembering our last conversations, asking the same questions, and wanting information that couldn't be had (my deceased father's cell number, his address, my grandmother's phone number, etc.).

I also believe Mom suffers from Sundowner's Dementia, as well, which is another type of condition that affects the patient around 5-6 pm with many of the same symptoms, but more so around end-of-day (that, too, will arise later in another blog).

Physically, Mom has had pain in her shoulders - a stiffness.  This, too, can be related to LBD.  You see, the Lewy Bodies attache themselves to the cerebral cortex related to the cognitive functioning of the brain, and then progress down to the movement components of the structure.  This, too, is non-reversible, but with P/T, and regular exercise, it can be slowed in its progression.

When walking, the posture is stooped, the arms stop swinging from side to side as with a normal walk on the average person.  The feet tend to shuffle, rather than take steps.  The movement is forward, with the head placed forward.  This can lead to an advance of movement that sometimes cannot be stopped (meaning she will gain momentum quickly and cannot pace herself).   The nurse at the facility calls it the "charging bull".  Mom has hurt her hand doing this, and it may explain a great deal of how she has hurt herself in the past while still ensconced in her own home, but hitting things that were in her way, inadvertently.

Memory.

This is something to which I can speak of the differences between LDB and AD (Alzheimers).

In one of the books I'm currently perusing on the condition, the author put it very well -

Think of your memory as being coded data, like a file in the library.  When something occurs, this is put into a file and placed on the shelf, coded, and tagged for later reference.

With Alzheimer's, the codes are blocked, and it is quite difficult if not impossible for the patient to retrieve that information.

Patients with LBD can access those files, but they're under a pile of papers, and the file itself is open so all the pages need to be sorted through in order to locate the proper forms for the recall.  As time progresses, and the affliction continues, the pile of papers grows more and more immense, making the locating of the memories much more difficult to locate accurately.

Now, Mother, having been the one who wrote the books on the family history, dealt with all the genealogical records, and used to be able to recall a  great deal, cannot locate a goodly amount of those memories accurately.  Remember the last blog when I shared her speaking of my brother's pool as being 1,000 feet long?  Because she remembered the pool, but the elements of the memory were jumbled with other information that was piling up on the table in her brain.

Now it all begins to make sense, yet in a nutshell (what a large nut to crack!)

Till next time!

The Week Ending Palm Sunday 2014

What a lovely week!  The weather has been wonderful, there is lightness in the air.

Last Sunday, my brother had Mom, my nephew (who was in town to play in the alumni basketball tournament), and me over for dinner.

It was very nice.  Mom was calm, as were the rest of the party.  Very convivial.

He showed Mom his backyard and the new pool, and the plans for the new landscaping - all due to the widening of the road behind his house (they took a chunk of his yard, which included a portion of his old pool).

Mother was quite content when we left, and when I dropped her off she was tired but happy.

Thursday evening I received an email from her friend, Jean, which asked if Larry's pool was really one thousand feet long?  I had to laugh - it's no where near that length, of course.   Mom hadn't remembered seeing me that past weekend, either, which is par for the course, but she was prompted and then recalled the events somewhat as they occurred.

Mom is still playing Bingo with Mo, the activities coordinator at the residence.  When I asked if she'd won this time, she remarked, "Of course!  I always win something!"  We had a good chuckle.

Friday I took her to see a movie.  She was excited about the prospect on Sunday when I mentioned it, but when I arrived her mind was set on a pair of new sneakers (the one's in the flyer for Fred Meyer - on sale, of course).  I sighed and then agreed to take her after the cinema.

We arrived at Eastport 16 and bought our tickets.  She saw there was ice cream!  Yes.  She had a double-scoop waffle cone (cookies and cream and strawberry).   We went to the theatre and watched NOAH.  She didn't sigh any disapproval, but kept exclaiming, "This is not a movie for children!"  there were no children about in the theatre, but I understood what she meant.

Afterward, we chatted as we headed for the car.  She was thoughtful, and asked why it was so violent and dark.  I smiled and stated that the demise of mankind on the planet was not exactly a cheery thought - though it would be a challenge to make into a family musical.  She smirked.

We went to Fred Meyer's, and they were having a sale on all types of sneakers - running shoes, walking shoes, FILA, Reebok, Nike, Sketchers, Naturaliser, etc.  I found the pair she had pointed out in the flyer, and she poo-poohed them - too flashy.

I found a pair that matched her shirt.  "But what if I wanted to wear something else?!"

I found white ones.  "They get dirty too easily, and I won't go around with filthy shoes."

Finally, we found a pair of Memory Foam Sketchers - grey, and fabric.  She liked them.  We found her size - 9, and the associate helped us out with a shoe horn.  She put them both on and took a stroll.  She liked them!  Then the associate brought another pair which made my eyes bug (I hate shopping, and wanted to get going asap), but Mom's eyes shone with delight.

She tried on one of the others, and stood up.  She took a couple of steps, and to my relief she decided they weren't as comfortable as the one on her right foot (the Memory Foam).  Hurrah!

I took her back home after buying a Thank You card for her book group in Port Angeles - they have been so good in sending letters, as have all her friends there.  Sometimes Mom gets a little sappy and teary eyed when she tells me about them.  But she also loves showing them off to us!

I dropped Mom off with the promise of seeing her Sunday morning.  "You mean tomorrow?"
"No, day-after-tomorrow, Sunday."
"But today's Wednesday."
"No, it's Friday."

She had received a beautiful bouquet of flowers from her old friend, Helga, in Port Angeles, and this touched her greatly.  "I don't know why they're all being so good to me!"

So, when I appeared this morning (Sunday), around 920 to pick her up for Mass, she was still at the breakfast table about to take her medications.
"Oh, so you're still alive!"
"I just saw you two days ago."
"No, it's been much longer than that."
"Remember?  We went to hte movies and I bought you those shoes, the card, and a salt shaker."
"Oh.  That's right.  Was that then?  I thought that was a long, long, time ago."

Of course, she had to show me the bouquet Helga had sent.  She thought she should give it to one of her friends, here, who had been so kind to her.  I told her, "No.  They're for you, and you alone - enjoy them!"

So, off we went.  After Palm Sunday Mass, we headed over to Jean's house to pick her up.  She was going to take us out to lunch as we generally treat her  (we do feel as though we infringe on her Sundays..).

We had a very nice lunch, and Mom and Jean talked about people they knew, who had died (Mom doesn't like that topic), and the latest news of family (mostly Jean's side - Mom doesn't really have much to tell, as she forgets).

From there, we dropped Jean off, and Mom and I went to Sellwood Park, overlooking the Willamette River and Oaks Amusement Park.

It was quite nice.  Warm, breezy, and fragrant from all the blossoms around us.  Lilacs were definitely in the air!

Mom has picked up her stride with the weather, the massages, and the P/T.    Even her endurance seems to be greater.  We walked the majority of the distance of the park before she settled on a bench.  She watched the dogs play, the kids play, and the birds.  She marveled at the blooms.  "How is your garden? Do you have a garden?  I've never seen your house, you know.  It's as though you're embarrassed to have me see it!"

"My garden isn't blooming like this, but some plants are getting ready."

"Well, that's because you're at a much higher elevation.  Your plants always look good!"

This was not from any prompting - even though she denies ever staying at my house (she stayed at least 2 times a year over the past 15 years), she remembered something about it.  That's good!

I took her back, as we drove through West and East Moreland, looking at the homes.

She was ready to rest when I left - but made sure I talked to the staff about her getting her wine with dinner.
"You also have a bottle in your fridge, you know."
"Yes, but why should I use that when they have several bottles they never let me drink from?!"  Good thought!

mugging for the camera at Sellwood Park

So, the Grande Dame is ensconced in her dwelling, looking out the window of her room onto the budding garden, listening to her stereo, and reading "The Plantagenets" and another book by one of her favorite authors, Bernard Lewis.

Life is good.

Differences Between Types of Dementiae

When people ask me about Mom, I tell them she suffers from LBD.  Of course, they give me a quizzical look.  I tell them she's in Memory Care.  Then, they make the assumption she has Alzheimer's.  Although the sign post states "Alzheimer's Care", she doesn't suffer from that particular type of dementia.  The sign should read, "Dementia Care", but for now, that's neither here nor there.

In 1994, according to sources I was reading back then, Dementia was classified into one category - Alzheimers.   There were no others that were recognized, and this seemed a good umbrella under which to place them all.    After all, my grandmother (maternal) was diagnosed in 1984, September, with Alzheimer's.  Back then, there was relatively little known about the condition, and so research was in its infancy, and they attempted to figure it out.

Since then, much has been done.  There are different types of dementia that are recognized.  Earlier in this blog, I have given these types - Vascular, Parkinsonian, Lewy Body, Alzheimers, which make up the majority of recognizable forms.  There are also other forms:  Cruetzfeldt-Jakob, Down Syndrome, Frontotemporal,  Huntington's Disease, Mild Cognitive Impairment, Mixed Dementia, Normal Pressure Hydrocephalus, Posterior Cordical Atrophy, Traumatic Brain Injury, and Korsakoff Syndrome.

Vascular Dementia

Vascular dementia is a decline in thinking skills caused by conditions that block or reduce blood flow to the brain, depriving brain cells of vital oxygen and nutrients. (https://www.alz.org/dementia/vascular-dementia-symptoms.asp) Vascular dementia can be related to Alzheimers, and Lewy Body Dementias if the blood vessels are blocked, and the afflicted begin to have sudden changes in their thinking; this can happen after a stroke, or a series of small strokes.  Experts prefer the term - Vascular Cognitive Impairment (VCI) because the impairment, while also a possible element of Alzheimers (AD) and Lewy Body (LBD) can range from mild to severe in the vascular thinking changes. (Alz.org). VCI can also be reversed in some cases.  This happens when a patient has a stroke, and through Physical Therapy, and a good team of doctors work with the patient to restore the blood flow to the affected blood vessels.  However, this is not always the case. For More on VCI, I invite you to visit The Alzheimer's Association Web Page.  There are also some books which address this condition, which may be quite helpful to those attempting to understand and research it. Alzheimer's Dementia Alzheimer's is a type of dementia that causes problems with memory, thinking and behavior. Symptoms usually develop slowly and get worse over time, becoming severe enough to interfere with daily tasks. (Alz.org) Did you know that Alzheimers is the Sixth leading cause of death in the US?  This is a progressive condition, but the average life expectancy can range from 8-20 years, depending on age, lifestyle factors, and treatments.  There is no cure.  Symptoms are the inability to retain short-term information, being unable to carry on a conversation as one normally would, experiencing paranoia about the people, places, situations, around one's environment, and the inability to function properly in one's environment as one normally would.  This is a progressive disease, and while there are treatments that can slow the process, nothing can stop it from taking hold and staying until death.  For more information about the symptoms and treatments, please visit the Alzheimer's Association Web Page on Symptoms. Parkinson's Disease Dementia - Parkinson's disease dementia is an impairment in thinking and reasoningthat eventually affects many people with Parkinson's disease. (alz.org) I'm not going to go into detail on this one, as it is caused by the same deposits on the brain (but in a different area from the start) as with Lewy Body Dementia (LBD or DLBS), as is Parkinson's disease.  The abnormal bodies with Parkinson's latch on to the mobility portion of the brain, and is made of the alphasynuclein protein, the fuction of which is still unknown. There are similarities with the plaque building on the brain, as with the tangles.  Alzheimer's Association states that Parkinson's is fairly common in those over the age of 65, with 2% of the population afflicted (if you ask me, that's not really a 'common' affliction).   The Lewy Bodies travel to the other regions of the brain which affect processing, and that's when the dementia begins its nastiness. Lewy Body Dementia - Lewy Body Dementia (Or Dementia with Lewy Bodies) is the same deposit on the brain's processing center as with Parkinson's.  It is made up of the alphasynuclein protein, and develops plaques and tangles on the brain.  They can then travel down to the other function centers of the brain. LBD is the 3rd most common type of dementia.  According to the Lewy Body Dementia Association ( http://www.lbda.org/category/3437/what-is-lbd.htm )  "LBD is a multisystem disease and typically requires a comprehensive treatment approach. This approach involves a team of physicians from different specialties who collaborate to provide optimum treatment of each symptom without worsening other LBD symptoms. Many people with LBD enjoy significant improvement of their symptoms with a comprehensive approach to treatment, and some can have remarkably little change from year to year. - See more at: http://www.lbda.org/category/3437/what-is-lbd.htm#sthash.PGKiIWXC.dpuf I know I've discussed many of the symptoms and some of the consequences of the ailment, in earlier posts, but people still keep asking what it is exactly.  To be honest, I'm still learning.   Mom is doing fine.  She's in and out of it - it comes and goes.  There are times she demonstrates paranoia of people coming in and stealing from her, but we nearly always find things behind her bed pillows, in her drawers, under chairs (where she put them to hide from others - but she does such a fine job on herself, as well).   She is walking slow, but it seems her energy level is high.  She isn't appearing to be off-balance, but to be sure I tend to hold her hand just in case (something she sometimes detests, wondering aloud if I really need to keep her in check - "I'm not your child, you know!") So, I'm still delving into the books.  Much of this is sharing for my own benefit, as well.  If you've other resources, please let me know and I will ponder a gander at them!

Mom and Lewy Body Dementia - One Year Later

After much reading and research, thus far, I'm beginning to believe that Mom is in the best possible place for her condition.

Why?

For several reasons.

1.  She is taking the correct medications;

2.  She is receiving Physical Therapy - which is highly integral to the maintenance of her physical abilities.

3.  She is receiving Massage Therapy - which is perfect for reducing her anxiety levels.

4.  She is eating on a regular basis, which is maintained and monitored, so she is able to keep up her strength, both physically and mentally.

5.  She has laundry and housekeeping done for her.

6. She has games and activities readily available - Scrabble with friends, Bingo at the center, etc.

7.  She is able to interact with others - for better or worse (she's never lonely).

8.  She gets out for walks, visits, Mass, and other activities that are safe, sane and enjoyable for her.

Her friends tell me she seems fine about 85% of the time, but then, all of a sudden, she'll slip out of the here and now, and treat them with another realm.    I see this quite often - but to the uninitiated (those not from our immediate family, or those who haven't spent vast, goodly amounts of time with Mom over the years) it isn't easily noticed.

You see, Mom likes talking about family history.  Lately, she's locked into the story of her grandfather who immigrated in the 19th Century.  However, I'm not sure how the Pope was involved, but in her story, he is.  It's all quite believable the way she tells it.   I've been asked about this, and I just smile - what's the harm in her telling these tales?

Mom has also fixated on a poem - or at least a stanza of one by Longfellow, A Psalm of Life.  I have boldened and italicized the stanza.

Her mind is functioning - but not always the same as yours or mine.  The Lewy Bodies attach themselves to a certain place of her brain - eventually, they will attack more parts, and will take on the appearance of Parkinsons Dementia.

 I'll hold on to these moments while I can.

Henry Wadsworth Longfellow (1807-1882)
            A PSALM OF LIFE
      WHAT THE HEART OF THE YOUNG MAN
                    SAID TO THE PSALMIST
    TELL me not, in mournful numbers,
        Life is but an empty dream ! —
    For the soul is dead that slumbers,
        And things are not what they seem.

    Life is real !   Life is earnest! 
        And the grave is not its goal ;
    Dust thou art, to dust returnest,
        Was not spoken of the soul.

    Not enjoyment, and not sorrow, 
        Is our destined end or way ;
    But to act, that each to-morrow
        Find us farther than to-day.
    Art is long, and Time is fleeting,
        And our hearts, though stout and brave,
    Still, like muffled drums, are beating
        Funeral marches to the grave.

    In the world's broad field of battle,
        In the bivouac of Life,
    Be not like dumb, driven cattle !
        Be a hero in the strife !

    Trust no Future, howe'er pleasant !
        Let the dead Past bury its dead !
    Act,— act in the living Present !
        Heart within, and God o'erhead !

    Lives of great men all remind us
        We can make our lives sublime,
    And, departing, leave behind us
        Footprints on the sands of time ;
    Footprints, that perhaps another,
        Sailing o'er life's solemn main,
    A forlorn and shipwrecked brother,
        Seeing, shall take heart again.

    Let us, then, be up and doing,
        With a heart for any fate ;
    Still achieving, still pursuing,
        Learn to labor and to wait.

---

The above poem was first published in the Knickerbocker Magazine in October 1838. It also appeared in Longfellow's first published collection Voices in the Night. It can be found, for example, in:

Longfellow, Henry Wadsworth. The Complete Poetical Works of Longfellow.Boston: Houghton Mifflin Company, 1893.

Dementia - What Is It? at least from what I understand at this time....

Thank you for joining me, again.

For the time being, I will be posting one blog a week on Dementia - specifically Lewy Body Dementia, and another on Mom and an update on her condition, as well as how she is keeping up with her life.


Currently, I am reading the following books on Lewy Body Dementia, and will be utilising them in this blog, as well as other sources I find on the web, books, journals, etc.
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Witworth, Helen Buell & Witworth, James. A Caregiver's Guide to Lewy Body Dementia.  Demos Medical Publishing.  New York. 2011.

Wainwritght, Adam, MA & Stevenson, Erik, MD (Ed). Lewy Body Dementia:  Causes, Tests and Treatment Options.  Kindle Edition.  2012.

Leatherdale, Lyndsay.  Vascular Dementia  Sundown Dementia  and Lewy Bodies Dementia:  Stages, symptoms, signs, prognosis, diagnosis, treamtents, progression, care and mood changes all covered.  IMD Publishing.  2012.

Johns Hopkins Medicine.  Johns Hopkins Health Alerts.  http://www.johnshopkinshealthalerts.com/

Mayo Clinic Online.  April 3, 2014. Dementia Definition.  http://www.mayoclinic.org/diseases-conditions/dementia/basics/definition/con-20034399

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DEMENTIA:

According to the Mayo Clinic Dementia is :

By Mayo Clinic Staff

Dementia isn't a specific disease. Instead, dementia describes a group of symptoms affecting thinking and social abilities severely enough to interfere with daily functioning.
Many causes of dementia symptoms exist. Alzheimer's disease is the most common cause of a progressive dementia.
Memory loss generally occurs in dementia. However, memory loss alone doesn't mean you have dementia. Dementia indicates problems with at least two brain functions, such as memory loss and impaired judgment or language, and the inability to perform some daily activities such as paying bills or becoming lost driving.
Dementia can make you confused and unable to remember people and names. You also may experience changes in personality and social behavior. However, some causes of dementia are treatable and even reversible.

There are several forms of Dementia, most notably Alzheimer's Dementia or AD, which people associate with old age or forgetfulness;  but before you begin jesting about finding yourself in the primary stages (which many are known to do, from time to time), remember: Most Forms of Dementia Are Progressive - which means they cannot be cured, and the prognosis is not bright.  It is nightmarish for those who have the diagnosis.  

According to all sources, thus far, there is an agreement to the symptoms - these may begin small and may go unnoticed, at first  (These were taken from Leatherdale):

-  Using the wrong word to describe something or someone (there is a story on this one with Mom)

- Difficulty following instructions or directions given to them

- Asks the same question or questions 

- Forgets about personal hygiene

-Forgets to eat

- Seems to disregard personal safety

-Forgets Routine Tasks

-Seems disoriented in familiar places and unsure of dates.

These will begin to grow and expand as time goes on.   Other signs that will become noticeable are:

-Memory Loss

- Problems with balance

- Inability to communicate, both verbally and physically

- Problems with gait and walking

- Problems with motor control

- Neglect of personal care

-Impaired judgment  concerning personal safety

- Paranoia

- Agitation

-Hallucinations

- Inappropriate Behavior

-Disorientation

-Inability to Process Abstract Ideas.

(2012, Leatherdale)

Dementia can have different causes - from plaque, to Lewy Bodies placing themselves on different parts of the brain, to strokes (sometimes reversible), brain damage, etc. 

There is a difference between Dementia and Senility, as well.  Senility is caused by shrinkage of the brain as people grow older.  While some of the same signs may present themselves, it is NOT the same thing!

There is also a great difference between the varied forms of Dementia!  Treating someone with Lewy Body Dementia (LBD) with the same drugs prescribed for those with Alzheimer's Dementia (AD) can shorten the lifespan of the patient, and cause irreparable damage.  I had no idea.

In fact, the treatments for the different dementias is different!  What works for one will not necessarily have the desired results for the other.

Yet, did you realize (as I did not) that usually most dementia patients are inflicted with a mix of dementias?  Yes.   It is possible to have more than one type!

However, most of these forms cannot be confirmed without a brain autopsy, which does the patient no good during treatments (their words, not mine).  

Lewy Body Dementia (LBD) is also closely related to Parkinson's - but the Lewy Bodies have settled on different parts of the brain (more about this in a later blog).

AS I am still beginning to learn more about this infliction, I must admit I may seem a bit scattered.  I am.  I learning something new every day, with every  read (and while reading 3 books at a time, for different aspects, and trying to convey it interestingly and palatably in this blog is quite a challenge!), and it is a bit overwhelming.

The books listed above are very easy to read, and are not that expensive on Amazon.com.

I'm sure you've questions that this has piqued, if you've managed to read this far.  Please, ask me, and I will endeavor to find the answers, or a source for you to refer.

Thank you!