Away and To the Dentist We Go.....Or, a Day with Mom

Wednesday, I went to take Mom to the dentist, something she's been clearly worried about, until last Sunday when she stated that she really needs to see her eye doctor.  Well....

So, I came in, after some very slow traffic, needing her to begin moving.  HA!  as if.  It would appear that when time is of the essence for anyone but her moving slower than a dead snail is an imperative.

After 5 minutes of looking at the coats in her closet, and then another 5 of brushing her teeth, then another 5 of finishing her coffee, then another 5 of her needing to sit, as the pain on her right side was terrible, I was finally able to prompt her to move.

Her walking was stiff and somewhat unsteady, so we needed to hold hands and move slowly, as well.

Getting into the car was also painful, but doable.  Once in, we took off, and I phoned the dentist's office to let them know we'd be a tad tardy.

Mom was full of observations - "Is that the hospital on the hill?" she asked of OHSU.  I confirmed.  Then she went on, "You know, those people just spend their money to show off, but they really aren't all that intelligent.  They're all crazy, you know, walking around and making no sense!"  Yes.  This was to be typical chat for the day.

The dentist ruled her teeth in very good condition, and Mom, as always, was very glad and in great spirits when she left.  She really does like them there.  They do all they can to make her feel special, and Dr. Brad seems to delight in being able to treat her, as well.

So, off we went for a drive to find a place to eat.

We found ourselves at Izzy's, as Mom wanted pizza, and I could think of nothing else I didn't want.  Now, this was an adventure.

We obtained a window seat and the server came over and explained how the "menu" worked.  I took Mom to the buffet, and she went right for the chicken and pizza, then plopped a few veggies onto the plate.  We sat and she imbibed in her lemon soda and water.  

  Walking with her through the line, I watched her plate begin to sag downwards, and she was a little irritated when I offered to help her with it. "What, you think I'm incapable of holding my own plate?"
     "Well, it's tipping downward, and I'm afraid you might lose your food."
     "That's incredibly rude of you.  This is my food!"
I was finally able to wrest it from her and successfully delivered her plate to the table.

Even though you'd think she ate tons, due to her weight gain, Mom actually just nibbles.  Her body was tremoring such that if you weren't aware of it, you might miss it, but it was definitely there - the entire body.

After, we decided it was too late to see a movie at the cineplex, and began to drive back to St. A's, where her mother was waiting for her to help her do some family writing, and my youngest brother was coming with his little girls for a visit (the girls are all in their twenties).  I told her they'd wait  if they already arrived.

On the Marquam bridge she began to panic.   "Where's the dog?"
"What dog?"
"That nice little dog that those nice people gave you at the restaurant?"
I had to think quickly.  "Oh, do you mean Samson?  My little dog?"
"I don't know.  Maybe."
"I asked them to hold on to him for me, and I'll pick him up on my way home."
"Oh.  That was nice of them."
By now, we were at OMSI, to see if, perhaps, we could possibly watch an IMAX.  But parking was an issue, and Mom really was having troubles getting up and moving (the restaurant was an event in getting her out of her seat!  I began to wonder if she wasn't playing it up, by this point).

So, we headed back to St. A's, after a lovely drive through various neighborhoods in Beaverton, Raleigh Hills, Woodstock, and Holgate.

When we finally arrived back at her place we needed to get out of the car.   She asked me to support her right leg and I bent down to do it.  I had barely brushed her pant leg below her actual leg when she gave out a scream of pain!  "
Stop it!  Stop it!  You're being too rough!"

I stepped back and looked at her.
  "What?" she asked calmly.
"I barely even touched you pant leg, and never touched you."
"Oh."  She looked a little guilty.
I gasped.  "You're playing all this up, aren't you!  You're being a real drama queen!"
She let out a laugh.  Then she began to laugh harder.
I believe the pain was real, but nothing as terrible as she let on.  she was able, through the laughter, to get herself out of the car.

But, before she did, I requested a picture of the drama queen.  You can see the results.

Once inside, she began getting herself ready for a nap.  She was quite tired.  It was a good day, and I'm glad we have our appointment on Monday...Perhaps we'll see if she has a UTI, or if it's actually something else.

The truth be known, 4 months ago Mom was in okay shape mentally.  The past three months have seen her decline in her awareness and abilities.  The rapidity with which it's happening is a tad frightening.  But, one never knows with LBD...
And her birthday is coming up on Tuesday!

Coming to Terms with One's Own Dementia...

As we age, we sometimes attribute faulty memory to the circumstances.  After all, who has a perfect memory, except for those rare and few cases.

But, let's say you began having troubles walking, began shaking uncontrollably for small spaces of time - a few seconds, here and there, or even a minute or two, and then things were just not seemingly normal from your perspective....What would you do?

According to The Dementia Guide.com,  most who grow into the affliction aren't truly able to notice what's really going on.

Here are some symptoms that we, those who are not undergoing the brain changes, would see:

• Does not know or understand that he or she has dementia. (This is also an example of thesymptom of loss of comprehension/understanding)
• Is oblivious to own memory or related problems (e.g. does not know he or she repeats themselves)
• Claims to be actively doing things he or she no longer does (e.g. laundry)
• Falsely believes he or she is still able to do things as well as they used to
• Does not recognize when he or she makes a mistake
• Cannot describe their feelings to people. This can also be an example of the symptom of language difficulty)
• Does not recognize themselves in the mirror
• Unaware of their own skills and abilities
• Denial of the disease

But those who are close to them see these things happening.  

In the beginning stages of Alzheimer's disease and dementia with Lewy bodies , people have varying degrees of self-awareness. Some people are very aware of their limitations, making them feel sad for the way they are now and making them worried about the future. In general, as the disease progresses, the level of self-awareness will most likely decline. In the earlier stages of the disease, the person you care for may deny or not understand that they have the disease. This can result in them not realizing their own limitations in their abilities , such as driving. As well, the person you care for may believe that they are completing tasks which are now being done for them. For example, they may think they have made the bed when someone else has. As their self-awareness declines, so will their ability to express their thoughts and feelings accurately. This loss of self-awareness does not have to be a negative thing. If someone with Alzheimer's disease does not recognize their decline, it is possible that they could believe they were suffering less. (DementiaGuide.com)

With Mom, there were times when she would put out an SOS to me about something that wasn't quite right.  Perhaps it was that she had mail all over the dining room table; it could be that she couldn't locate something that was right under her nose; or perhaps it was when she took a nap, woke up and saw the red sky, jumped up, took a shower, dressed, ate a quick breakfast and then drove madly to her friend's home to discover it really wasn't morning, but night, and the hike was 12 hours away; or that she would become lost in places very familiar to her.

But honestly, Mom was also in denial.  I believe she knew more than she let on to most people.  She wouldn't even tell her doctors - for fear that what has come to pass (her needing to be in a Memory Care) would.  She wouldn't even allow them to know her mother had suffered from Alzheimer's, and was indignant that anyone would assume there may be a problem with her thinking or memory - she still claims her memory is far better than anyone she knows. 

And, this is typical.  According to the online journal, Dementia e Neuropsychologia, patients tend to dismiss or deny there is anything happening, or any reason for concern:

Lack of awareness of deficits associated with Alzheimer's disease (AD) has been commonly reported as a clinical feature of dementia and can be present from the early stages6, ranging from very mild to very severe. The milder severity is seen in the form of acknowledgment of memory impairment but minimization of its severity, whereas the most severe intensity is shown as claims of good memory skills5. Several studies have focused on the various factors involved in lack of awareness in dementia, namely the presence of cognitive deficits, the site(s) of the lesion, presence and severity of depressive symptoms, severity of the disease, and the existence of psychological mechanisms of adaptation1,6-8.(Dementia e Neuropsychologia)

So, what if her doctor or family hadn't taken notice?  What if she'd been allowed to go on with her existence without her support?  

Another topic for another day. 

The Week Ending 1/25/2015 or Norma In and Out of the Looking Glass....

This was something of a busy week, with some revelations about Mom's status, health-wise...nothing alarming, just....

So, The first part of the week went, I am to presume, without incident.

Wednesday, the RLC (Connie and Jean) came for a visit.   They didn't play Scrabble, but chatted.

Mom is having pain in her leg, and is beginning to tell people she's going to lose the leg.  Hmmm.  We have an  appointment for the 2nd of February, so we'll see what happens.

As they were leaving, Mom wanted to follow them in her car (which she stated was in the back, but it wouldn't be a problem for her to get it, drive around and meet up with them).  But they understood there was a gathering, so this was a fine excuse for them to take their leave so she could attend.

Thursday, my brother from Port Orchard, Tom, and his wife, Peg, came down and took Mom to lunch.  As they drove to their favorite hangout with Mom, the Broadway Grille, Mom began dictating they were going the wrong way.  She kept offering directions to her grandparents' house in Irvington, and then to Jean's, stating they were expected.  Well...this was news!

As she'd already eaten by the time they were able to arrive, she wasn't very hungry, but she did have enough room for a milkshake, and some wine!  But of course!  Everyone knows that ice cream is good on a full stomach, and mixed with wine it makes a lovely combination!  Ugh!

The attendant who takes care of Mom's Physical Therapy arrived, once they returned, and told Mom she needed to have her session.  Mom excused her and told her she didn't want it.  AHA!

So, Mom is refusing, apparently, her P/T, nor is she allowing massage, which seemed to stave off the pain she was having before.  Now the pain is returning, and she is unwilling to do anything for it.   Except, tonight she stated that I was crazy, thinking she had any pain.

Arrrrg!

This evening, she wasn't able to completely get what was what.  She was able to carry on a semblance of a conversation, but then it would saunter off into another realm.

An example?  She  and my brother were discussing his children.  Then, out of the blue, "How long has it been since you lived with your mother and father?"

My brother was perplexed.  "You mean, how long since I lived with you and Dad?"

"No, your parents.  We're not your parents."

"That's funny, I always thought you were my parents."

"Uh uh.  No, we're not."

I'm not sure what happened next, but my brother was gladdened by my stating we needed to get going.

Earlier, Mom was busy with the newspaper, taking it apart and then trying to put it together again - "The pages aren't right.  I need to put them back in order!"  Now, with the Sunday edition, this can be seen as a bit of a Herculean task!  But, she got them together, as she saw fit, and then put it away.

A lovely dinner.

On the way home, I asked Mom if she could see the stars.  She finally saw one, then began embarking on a lecture about how people might assume I'm not intelligent.  Odd.

When we arrived at her place, she was terribly weary.  She wanted to know where I wished to sleep, and couldn't understand why I wanted to go home.  But, after checking the fridge, where she told me people were stealing her sodas (it was full of soda - almost as though she hadn't had a one in the past week since I filled it).  I found oranges in her cupboards, the fridge, and she told me she had some hidden elsewhere.

<sigh>

I kissed her goodnight, and reminded her we had a dentist appointment Wednesday.  She shrugged her shoulders and gave me a kiss goodnight.

We'll see if she's ready on time on Wednesday, or if she's going to be stubborn...another story awaits, I'm sure. 

What Causes the Hallucinations in Lewy Body Dementia?

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

Wow.

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

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

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

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

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

There was also the Medication Sensitivity.

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

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

Well, with Lewy Body Dementia, this is normal.

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

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

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

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

So, what is causing these?

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

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

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

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

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

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

Visit These Sites for More Information:

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

What is the Parahippocampal Gyrus?

What causes visual hallucinations in dementia with Lewy bodies?

Lewy body dementia Mayo Clinic

Lewy Body Dementia and HelpGuide

Alzheimer's vs Lewy Body Dementia - and How I Learnt

When Mom began having her issues, I have to admit, I was a bit in denial.  How?

Well, I began blaming her medications - which is a normal place to begin.  We consulted her doctor, and he recommended we see a neurologist, first, before he stopped prescribing the Lorazepam.

My reasoning behind blaming the medication was that Mom referred to it as her "Happy Pill!"  She would tell me that without it she felt awful and depressed.  I realized she was 'slightly' addicted.

So, later, Mom did see a psychiatrist as she went with her friend, Phylis.  There they changed her to Valerian Root, which had a calming effect, but Mom complained it lacked the punch she enjoyed with the other.

However, not long after, the confusion and the hallucinations began to creep back in.  Mom changed doctors, and the new one prescribed Lorazepam, as she felt the Valerian was not having the desired effect (or Mom convinced her of this - Mom was quite savvy in telling her tales that would get her what she wanted!).

Within a month, Mom was having many issues.  She was hallucinating, calling both my brother and me during the day and in the evening with demands for our dead father's cell number, his address, her mother's cell number...it goes on.

Clearly, something more was happening than Alzheimer's.

We'd been introduced to Alzheimer's with our maternal grandmother in 1983 when she was first diagnosed.  She'd had none of the confusion and hallucinations that Mom was having; thus, things weren't jibing.

Mom's doctor phoned me, as were her friends.  What we discovered was that Mom had taken a 2 month dosage of Lorazepam in 3 weeks, and then the physician standing in, while Mom's was out, made a new scrip for refills.  So, we began to attribute the hallucinations of being kidnapped, losing her mother on a walk, being held hostage, having her house moved to Portland while she slept (and back again), etc., on the drugs.  We'd even had an intervention which only angered her (we wanted to help convince her to move to Portland, where family was close and more available to take care of her).

Conversations between her friends and doctor and myself became a norm.  Her best friend had sent me literature on LBD, but I couldn't see the fit.  Then others began mentioning it - like her doctor.  I was still skeptical.

Only after she was diagnosed, and I began to dig did I realize what we were dealing with.  It IS different from Alzheimer's in so many ways.

Lewy Body Dementia may also include Parkinsonian Symptoms.

There are Cognitive Fluctuations with Both, but Alzheimer's (AD) has this as the norm with the First Symptoms, Lewy Body (LBD) does not.

LBD has  Psychoses, meaning hallucinations, and delusions.  AD cases of these is minimal.

AD patients tend to lose their speech more rapidly.

AD patients tend to experience sleeplessness.  LBD patients tend to experience drowsiness at all times, with the ability to fall asleep within 5 minutes, if so desired.

LBD patients also experience physical symptoms of stiffening on one side of the body, which is also indicative of Parkinson's.  They also tend to experience tremors, or other Parkinsonian symptoms.

Now, while Mom may amaze you with her tales and quick mind, you need to be aware that much of what she's telling you has no basis in reality.  As her new primary stated, "She's so engaging!  I could just listen to her stories for some time, and never be bored."  However, many stories come from her dreams, and much from a very fluctuating memory.  Nothing seems to remain locked in except her relationships to certain people she's known for decades.

Her mother?  She knew who people were, she simply couldn't verbalize.  She could dance, and loved moving (sometimes escaping into the night only to be found many miles away on the other side of Portland by the Police).  Mom?  She has a predilection for sitting and not moving much; and she used to be constantly moving.

Yes, there are differences, and it's not necessarily the medications.  It's the mind.


Much Thanks to:

Comparison of Dementia With Lewy Bodies to Alzheimer’s
Disease and Parkinson’s Disease With Dementia

National Institute on Aging

Lewy Body Dementia Association

Alzheimer's Association

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

What a week.

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

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

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

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

Yes.  Juice.

No.

It was wine.

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

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

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

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

How wonderful she was so busy these past hours!

But it didn't happen.

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

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

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

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

Where did those come from?

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

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

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

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

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

Terry came by and we all had a wonderful visit.

Soon, though, it was time to go.

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

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

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

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

Daytime Sleepiness and Lewy Body Dementia

Mom has really been tired nearly every time I see her.  It's not that she's dragging, it's more that she tends to nod off when not truly engaged.

This can occur at Mass, in the car, at the cinema, or whenever.  If a place to put up her feet is proffered, she'll gladly take it, only to zone out in a matter of a few minutes.

Why is this?  

Alzheimer's patients tend to have more experience with insomnia, and not being able to fall asleep very quickly; however, Lewy Body patients have the ability to fall asleep within a few minutes, and then be fine - then repeat, perhaps, several times a day.  The trouble may be they can't always stay asleep.

Sleep problems including excessive daytime drowsiness and difficulty staying asleep are common. Many patients exhibit REM sleep behavior disorder (RBD) that manifests by the patient acting out his or her dreams (UCSF Memory and Aging Center, 2015.)

Now, there hasn't been any indication that Mom suffers from RBD (REM Sleep Behavior Disorder), but she does confuse her dreams with reality; the two blur into one vivid world, where her parents, grandparents, my father, and other people are still very much alive.  

Not Mom, and with LBD, the hand wouldn't be holding the head....

This is quite typical with the disease.  And, as much as you may want to correct her, you'll never win such a battle - they do exist, still, for all intents and purposes, in her world.  

The following is from the Caregiver Forum at the Lewy Body Dementia Association website:

Sleep disorders like sleep apnea, restless leg syndrome and REM sleep behavior disorder are common in LBDs. Sleep disorders often prevent the person with LBD and their caregiver from getting sleep. Excessive daytime sleepiness, despite adequate rest at night, is also common in LBD. Ask your physician to order a sleep study to identify and treat ALL underlying sleep disorders. It is also important to review sleep hygiene such as use of alcohol, caffeine, chocolate or other substances late in the day. Many foods and over the counter medications can have effects on sleep. If excessive daytime sleepiness is a severe problem, a sleep specialist may recommend the use of medication such as a stimulant to promote daytime arousal. - See more at: http://www.lbda.org/node/196

As you can see, Mom is in good company.  Ordering a sleep study for her would be out of the question, though.  And, she is sleeping through the night, waking, typically, around 9-10am (which is quite unusual for someone who used to be up and about between 6-7 am).  

As the disease progresses, will we be seeing more of her abed and asleep?  Most likely.  She's already begun to lose her train of thought (unable to complete a thought), and the disease seems to be progressing more rapidly than expected (on my part).  

We will just need to wait and see what the future holds...

Not Mom...but you get the idea.

For More Information on RBD, LBD Sleep Disorders, Please visit the following websites  (All sites are cued to present either the main page or that page which leads to the ailment):

The Lewy Body Dementia Association

The Alzheimer Dementia Association

National Institute on Aging - Lewy Body Dementia Handbook

The Mayo Clinic

Today's Geriatric Medicine

Alzheimer's Research & Therapy

Smell, Taste, and Lewy Body Dementia

One of the symptoms of LBD is the loss of smell, and taste.  This occurs, typically, very early in the onset of the disease.

Now, with Mom, this was difficult to figure out, as she never was one to comment on smells, unless they were overwhelmingly pleasant, strong, or odious.

One memory was a hike we took, one day, over 20 years ago, from Deer Park to Obstruction Point in the Olympics.  Now, this was not a rigorous hike, but one that required (for me) patience, and the ability to help Mom carry on.  At several points she would sit down and tell me, "Just leave me here and let me die!"  When I retorted with something about her being able to feed the mountain lions, she was vaguely amused, but it did help keep her going.    Then, at one point, we walked into an open meadow of nothing but lupine.  Wild lupine.  Beautiful.  We sat among some other hikers to take in the sight, and allow Mom to take a breather.  Then it hit us - The fragrance from so many of the spiked blooms was like soft-scented soap, but it wasn't overpowering; rather, it was intoxicating, and unforgettable.

Another may have been when she caught my house on fire, but it was partly the smoke detectors and the thickness of the smoke.  Looking back, she didn't really have much reaction to the smokey smell...just the incident.  It makes me wonder....

Lately, I've been more aware of the lack of smell, as I know, now, that this is a symptom.

And the other day, I learnt that taste is another factor.

This I needed to consider.

Then, it hit me.

The foods Mom likes are those she used to appreciate.

 The soda's fizz is something she can count on.




                                                   The perkiness of the tangerines

is another stimulation she gets from no other food.

  Chocolate and almonds go together to provide endorphins.

 But everything else gives her nothing, really, to relish as once they did.  She seems rather indifferent to them all.

 Perhaps the oversalting of the food gives her some stimulation in trying to find the taste, once again.













So, it's the texture and the stimuli that allow her to appreciate the foods - not the taste, any longer.   How sad and bland that all must be.....

for further reading and information, please visit:

The Scientist:  Smell and the Degeneration of the Brain

Academy of American Neurology:  Taste and Smell Disorders

UCSF Age and Memory Center

Journal of Neurology, Neurosurgery, and Psychiatry:  Asnomia and LBD

And the Hits Just Keep On Coming! or The Week Ending 1/11/2015

This was an interesting week for Mom.

She doesn't recall much of it, but boy is she on a mission - and then in the next breath it's in the wind!

She's been rising around 9:30 am every day, feeling rested and relaxed.  Yesterday, she arose after 10:30.  And, to boot, she's still rather tired.

No, she's not been experiencing RBD (REM Sleep Behavior Disorder) that we're aware of, but this is common with Lewy Body Dementia, apparently (and I 'll be writing about it in the coming week - stay tuned!).

She played Bingo, and participated in other activities, although she says she did none of it (she's not quite an accurate reporter).

Jean and Connie came and visited, and she and Mom went through some clothes that Mom says aren't hers (but they are!).  They had a very nice visit, playing Scrabble (did you know that I.E. is an acceptable word?  According to the Dictionary of Mom, it most certainly is!), and chatting.

They've learned some strategies for keeping Mom from trying to leave with them, and this has been quite successful.  Mom is easily distracted!

Today, I was going to take her shopping for some new clothes, but the time grew out of hand, and it took longer to purchase her groceries on my way to see her, so I'll have to figure out a way to get her to remember they're hers, if only to buy them, have her try them on, and return the ones that don't work...Hmmmmm.

Anyhow, she'd told me she was out of oranges, so I bought her two bags of tangerines, which she really enjoys.  As I was putting those and a case of Diet Pepsi in her fridge, I had to take out some cups and glasses she was storing in there.

Next, after the oranges and unpacking the Pepsi, I opened the cupboard to put in some mini chocolate bars she tells me she enjoys.  Voila!  More oranges.
"Mom, you've got oranges up here in the cupboard.  I thought you didn't have any..."
"Well, people steal them.  I don't know who did that, but I need you to be careful with them (sic)!"

I also noted that she had a bag of cards, but it was bulging with Kleenex.  Yuck!  "No, they're just wadded.  I haven't used them," she stated.  I found the idea somewhat repugnant, so I tossed the nose-wipes into the trash.

So, from there, I discovered she doesn't like the socks we bought, as they're not "lacey" enough.  There's another venture I must endure...But, I have sources for information, which I will definitely follow.   So, she's been wearing the same two pairs - with a washout every night...I warned her about how disgusting that was, and if she keeps it up, she'll invite pests, like infections, insects and vermin.  Well, I was told I was full of prunes...So much for that!

We went to Jean's for lunch, and Terry was there with Donuts.  Mom really liked those.  She ate two.  Then we had some lovely hummus and pita chips, followed by Spanish Rice and Mahi-Mahi.  Mom was ready to go in less than 2 hours after our arrival!

However, Jean tempted her with a bowl of ice cream, topped with the last of some rhubarb liqueur given me as a gift years ago.  Mom enjoyed that!

On the way home, Mom wanted to attend Betty's book group in Port Angeles, but Betty, apparently, lives walking distance from Mom's place, now (no, not really, she's about 250 miles away!).  I reminded her that we wouldn't make it until after dinner, and that would be rather rude.  Mom agreed.

She then wanted me to go out and buy her some oranges and soda.  I reminded her I'd done that and put them away for her earlier.  She said she didn't believe me, but when I showed her she couldn't understand why (she'd forgotten she'd forgotten, obviously!  is that a phrase????)

So, after the usual trying to  get me to commit to moving her furniture tomorrow (or tonight!), I left her, ready for a nap.

Mom cannot go to church anymore, unless I was to take her Saturday night, which opens a gigantic can of worms for me...and she's really not that upset that she doesn't go, either, which helps.  They do have services there, at the center, and she's encouraged to attend, which she does, but forgets within the hour.

She is declining, but her spirits are good.  I'm not too sure where we'll be within the year, but that's too far to worry about at this point. 

How Do You Tell Someone They've Got Dementia???

Oi! What a conundrum!  Your loved one has shown symptoms, and you've done your homework.  They're at a loss as to what's happening, perhaps even unawares, except that, perhaps, things just aren't meshing the way they used to.

What will you do?

The doctors are concerned and have provided you with information.  You've gone to the psychiatrists (sometimes you've learnt to trick them into going - with Mom this was a real issue), you've consulted about medications and tried all you can.  Even a neurologist, perhaps (there was a referral for Mom, but they contacted her, not me, so it went unnoticed and undone).

All signs point to dementia.  Not sure which type, yet, but she's a bit frazzled and so are you and the rest of your kith and kin.

Finally, there is a diagnosis.  Mom wants to know what it is.  You know there will be some sort of dramatic occurrence if you just blurt it out, so you work it out in your head as to how to deliver it softly.

Softly?  Really?

Can you tell someone that a very close loved one died softly?  I suppose...

According to Alzheimer's Austrailia, there may be reasons not to share the diagnosis.  I've copied the page for you, below:

Preparing for the diagnosis

Wherever possible, the person undergoing the assessment for dementia should be allowed to decide if they want to know if the diagnosis is confirmed. In general, if a person is aware that they are going for a diagnosis they will be able to make that choice.  

Some doctors will always tell their patient the outcome of the diagnosis, so it is important to discuss this issue prior to proceeding with the diagnosis. 

If the person is not in a position to understand the implications of receiving a diagnosis of dementia, you need to make some judgments, based on your understanding of what the person’s wishes would be. What would their choices have been if they were able to understand the implications? Have they ever given an indication at some time in the past as to what they would have preferred in a similar circumstance? 

This is an important and difficult decision to be making on behalf of another person. Talking to family and friends, as well as to the doctor or specialist beforehand may help. 

To tell or not to tell?

There are many reasons for telling a person with dementia about their condition:

• It is now widely accepted that people have a right to know any medical information about themselves, if this is not to their detriment
• Many people are already aware that something is wrong. The diagnosis of dementia can come as a relief, as they now know what is causing their problems
• Knowing the diagnosis can help a person understand their situation, and make important plans for the future, particularly about legal and financial matters
• Knowing about the disease allows for an honest and open discussion of the experience of dementia between family and friends
• Access to information, support and new treatments are helped when the person knows about their condition.

However, there are a number of reasons sometimes given for not sharing the diagnosis with a person with dementia:

• The very nature of the dementia changes the ability to understand and remember information. It can also affect people’s abilities to deal with emotional issues. The person may not understand the diagnosis, or may not remember it
• It may be felt that the person will become very distressed by the discussion. Families naturally feel very protective of their relative and wish to spare them the trauma.

Remember

It is generally recommended that a person with dementia be told of their diagnosis. However, a person has a right not to know their diagnosis if that is their clear and informed preference.

How to share the diagnosis

Sharing the initial news of the diagnosis may come from any one of a number of people. The doctor or specialist, assessment team or members of the family may talk to the person about the diagnosis either individually or as a group. You might like to consider having someone present at the time of telling to provide extra support. 

Planning ahead about the best way to share the diagnosis will make it easier. As individual responses will be different, careful consideration must be given to every individual situation. However, there are some considerations that will be generally helpful when talking with a person about their diagnosis:

• Ensure that the setting is quiet and without competing noise and distractions
• Speak slowly, clearly and directly to the person
• Give one message at a time
• Allow time for the person to absorb the information and to form questions. Information may need to be added later
• Written information about dementia can be helpful to take away and provides a helpful reference. Alzheimer's Australia has information written specifically for people with dementia. In some instances this information is available in video or audio format. Contact the National Dementia Helpline on 1800 100 500.
• Ensure that someone is available to support the person after being told about the diagnosis.

What information to share

As a general guideline a number of things will need to be explained. These will include:

• An explanation as to why the symptoms are occurring
• A discussion of the particular form of dementia, in terms that are appropriate to the person’s level of understanding 
• Any possible treatment for symptoms
• The specialised services and support programs that are available for people with dementia.

Informing a person that they have dementia is a serious matter, which needs to be handled with great sensitivity, calmness and dignity. It can be a very stressful time for everyone. Don’t forget to look after yourself. Alzheimer’s Australia offers confidential counselling and support for families, carers and people with dementia.

This information is also agreed upon with Alz.org, and other resources.  

It's not a wonderful issue to think about, nor to have in front of you, but it helps to have some idea as to how to begin to plan, which is not something I'd care to do again.  

Dementia v. Ageing

Today it seems as though Dementia is a part of ageing.  Is it?  As we grow older, do our minds also diminish in abilities, while our bodies begin to sag, atrophy, and become mere masses of jiggly flesh?  of course not.  Nor are those descriptors accurate (but they were fun to imagine, yes?).

There are studies that do reflect the theory that as we grow older our minds also seem to decline.  However, those are not longitudinal studies, and fail to account for the variables.

Huh?  What did you just say?

Well, according to at least one study, it would appear that our brains begin to stop working as effectively in our 20's, and decline on a steep decent from then on.

However, this study was done by speaking with individuals, within a certain realm of time.  The factors that aren't thought of are:

1)  Educational Level

2)  Lifestyle

3)  Looking at each individual over a range of time to actually see if (and how) their mental capacities are affected by age.  

Rather, these individuals are simply picked and then tested - how reliable is this information?  Not really.  

Think, rather, of Violet Crowley in Downton Abbey - she's pretty sharp.   Betty White?  Another example.  Jessica Tandy, Helen Hayes, Grandma Moses, Agatha Christie, George Burns, and many, many, others, who lived to a ripe old age, and never ceased to be sharp as tacks.  

Despite what the media and others might have you believe, if you keep your mind active, live healthily, and keep yourself challenged, chances are you, too, can still keep your faculties, should you be lucky enough to pass the upper benchmarks...

Ageing and Dementia go hand in hand only insofar as older folk seem to be more afflicted, but at least 2:1 will be able to avoid such a diagnosis; they will be more prone to diabetes, perhaps.  But that's for another day. 

The Week Ending 01/04/2014

The new year signifies a new beginning, yet for Mom it sadly announces more decline in her abilities and thinking.

She isn't recalling much from the recent past, and still holds out clothing my brother and sister-in-law bought with her (but she didn't try any on) as things that need returning to them.

She appreciates cards and letters which she keeps handy and looks at on a regular basis, some she believes have just only arrived!

She is speaking more, now, about writing to people, with which Jean is quite helpful.

Jean stated that Mom is quite into rhymes - silly ones.  When Jean squatted down to pull out the folding chair from under Mom's bed, Mom told her she told Jean she wasn't very limber.  "No, I'm not Limber Flimber!" retored Jean.  Mom giggled.  It had been some time since Jean had heard that sound from Mother.

She is not reading much, and sometimes has a Wall Street Journal to peruse, but there is no evidence she takes anything mentally digested - it's somewhere, lost in the ether.

Her conversations have been moved to whatever pops into mind, rather than following even a slightly linear track.

This week she continued to sleep in, and believe she's going to move back to Portland.

She received 2 cards from friends, Betty and Nadya.  She informed us that Betty lives right around the corner from where she's now living.

She is now, also, interested in reading O! Pioneers! by Willa Cather, as this seems to be the book Betty spoke of in her note.  So, I'll order it, and, in a month or so, cart it back to my house to read.

She remembers the movie, but not much of it.  Just the going to it.

This evening she was watching Charade with Cary Grant and Audrey Hepburn.  She kept speaking of the actors as though they were still as young as they were in the film.  She thought it a great deal of bosh that we stated they had died, believing us to be trying to trick her.  But, this is her world, at this time.

On the way home she spoke of her grandmother and wanted my opinion of her (believing she was still alive 62 years after she passed).  It was an agreeable conversation.

Upon her return she wanted nothing but to get to bed.

Thinking back over the evening, she wasn't craving her 9 ounces as before - but perhaps things were more relaxed.  Also, she is having troubles moving  - or at least getting started from rising from her seat - there is an unsteadiness about her.

A clothes shopping excursion is planned for this Sunday, before we get to Jean's for lunch.

But for now, this is all I can share.  The walk down the hill is increasing in speed.