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

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

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

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

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

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


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

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

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

Preparing for the Near Future

Looking back over the past two years, again, one is left in limbo wondering what will we be surprised within the upcoming days.

It seems as though we've progressed/regressed (depending on your view) quite a bit.

Shuffling is more pronounced, but perhaps that's from lack of lower body exercise.  I was pondering over Mom's shuffling last night remembering her at home doing much the same in her slippers.  It wasn't that she couldn't lift her feet - it was just the way she liked to walk in the snugness of the footwear.  

Mom doesn't want to walk  much anymore - such a difference!  She's always hated hills, and the last time I  took her to the park for a walk, she demanded we park near a flat surface with short or no hills.  She was able to do the walk and did so quite well.  However, since then, she's not wanted to go very far.  Could it be arthritis?  Could it be that she feels unbalanced enough she doesn't feel safe? this would make sense, as she would not tell anyone out of vanity.

She reads marvelously, yet she refuses to write anything.   Truthfully, her thoughts cannot manage much in the way of writing; she begins with one thought and that segues into others not remotely connected, and this goes on through the note.  Looking back at my birthday card which began harmlessly, I was (probably because I have a perverse sense of humor) amused by her sympathy at my loss.  It went from birthday to a condolence.  But her heart was in it.

One of her friends wrote me and stated that 2 years ago Mom had written her 23 times, the next year 10, and this year once, with the help of Jean.

So, what's going on?

Mom has confided in her friends that her mind isn't quite right, and she has some difficulty with thinking straight.  For her this is a terrible place.

Reading through her journals around the time of her mother's death, she is full of reflection wondering how dementia could have afflicted our family.  The same sort of thoughts came to light when her brother was diagnosed with Parkinson's.  Knowing that Parkinson's can tend to be inherited or gene-linked, this caused her great concern as she began to fear for herself.

As LBD and Parkinson's are related by the little buggers that are Lewy Bodies, they affect different parts of the brain at different times.   And, as both Mom and her cousin, Alice, are both afflicted there is the chance that one or more of us could be next - and yet we haven't the dour outlook as does she.

Aside from the motor problems and thinking there is also the balance which may come next for her.  

So, what happens then?  We adjust her care as it needs to be adjusted.  She's in a great place where they will keep her and tend to her through thick and thin.  There are some places where once they become immobile they need to find another placement.  I was lucky to know to ask when checking out St. A's.

So, whatever the future brings we will face it and work with it as we best can; fortunately we've a great staff working with her who are open to new ideas and help us understand, as well.  

The Week Ending 04/26/2015

Have things changed this week?
Did Mom bathe?  yes.
Is she wearing her new clothes?  sometimes
Is she wearing her stockings regularly?  when she's not taking them off
Is her edema better?  kind of.  she says it's not a problem (HA!)
Has she been exercising?  upper body.  Lower body not so much.

Those are the questions asked when I move in to visit her and take her to Jean's house, this morning.

Earlier in the week, I discovered that Mom was participating in more upper body exercise than lower  and made the case for continued lower strength building, as well.   It would seem that she complains of her back aching and hurting when she first begins walking, but then as she moves the pain decreases (my observations from walking her).  Whether or not that translates to the exercise coordinator or not, I'm not sure.

 On Tuesday the worker came in and cleared out Mom's closet of all clothing that had even a speck of dirt on it - Mother had thrown a fit!  But they were washed and when they were returned, Mother told them they weren't her clothes and to stop putting them in her closet.

On Wednesday, Connie and Jean paid their visit.  Mom had some hearty laughs (a true present as this hadn't been on tap for some time), and had greeted them with a smile (something else unseen for a bit).  They engaged in Mom reading from the journal Connie brought and they were able to chat about the content - it's heartening to assume Mom has her wits about her, but we do know all this was lost a few minutes later after they changed direction in the conversation.

Unfortunately, on the way out Connie fell and needed to be taken to hospital where she was treated and released - the prognosis was a possible fracture of her hand, but her face was a bit mashed as she went face-first onto the floor.   This put a pall on the earlier joviality of the day, but knowing her she will mend quite well.  Our prayers for her recovery.  Luckily she has a good system of offspring that will help tend to her recovery.

Today found Mother busily doing not much.  She bathed, brushed her hair, and had done everything Ledi had requested she do.  This was good.   We found her lipstick in her purse, and then she brought out a bottle of Visine for her eyes.  This wasn't good, as the opthimologist had told her not to use them, and the medaid needs to put them in (another type that's better for Mom).  Luckily the bottle was dry, so I tossed it out.

Mom was also upset that I asked her what jacket she wanted to wear.  She told me to stop telling her what to wear.  Sheesh.  So, after a few futile attempts at leaving and having her do it herself, she was ready.

We drove to Jean's and had a lovely lunch of omlet and hash browns.  Mom wasn't very hungry, though.  She did, however, after stating she couldn't eat another bite, have a dish of ice cream (Duh!).    She truly enjoyed the company of Jean's sons, Tim and Terry, and Terry's daughter Jaida.

Of course, there was the Capgras Moment when she mistook me for Jean's late husband, in front of Jean and Terry.  This was a first!  But then, I remember over a year ago when she kept suggesting I should marry Jean.  Oh Goodness!

Then I suggested we go for a walk around the block to see her grandparents' house.  She complied.

  Terry said his goodbyes as we trotted off down the street.  Mom was worried about her back pain, but as she'd just taken a vicodin, it seemed a good prospect.    And, this way Jean got to show off her garden.

They walked down the neighborhood as two old friends, which they are.  Jean did a marvelous job of keeping Mom balanced, while showing off her knowledge of all the homes in their part of Irvington.

Mom complained a few times about her back breaking - but she kept shuffling on.

They crossed the street near where some of their childhood friends lived even in adulthood.  Mom remembers names, and sometimes anecdotes, but faintly.

Mom really loved some of the gardens on the streets.  Her favorites, though, are the trees.

After the walk, Mom's disposition went from cantankerous to calm and relaxed.  Hopefully this will carry out through the week.

An interesting, but good day.

Some quotes of the day were:
"If you listen, I will tell you how to take a humble home and make it more so."

"Why werern't you at breakfast with your father and brothers this morning?"

"Some people like to buy their food alive and then kill it when they feel like it, but why they need the money, I don't know.  They're just lazy, I guess."

After sending me out of the room to speak with Ledi:  "Why are you talking to people?  Don't speak to anyone unless I give you permission!"

How's Your Mother? What's the Best Response?

People often ask, "How's your mother?"  They are generally sincere in asking this.  I know some who dislike such a question about their immediate relative who suffers, but I don't.  But then, again, I'm never quite sure how to answer.

To be sure, this is a tricky question.  One might answer, "Oh, the old gal is doing quite well, thank you!"  and in many ways, Mom is, as she's breathing, eating, has interests in some things and interacts, to an extent, with others.

Another response might be, "She's like a well-built old boat.  A few leaks here and there, but there's still some time before she goes under."  This, too, is quite true.  Mom's health is pretty solid, but for her blood pressure, edema, and dementia.

There are other quips that might suffice and they would seem callous and uncaring.  The honest answer, which might not suffice nor be interpreted properly would be, "I'm not really sure.  This is a new path we're moving down and there are surprises that arise nearly every day."

Looking back over the course of our journey, we've all been surprised and wonder what lies in store, as well as when will the next shoe (or, in this case, over-sized anvil) fall.  We never know what to expect - she surprises us as much as the disease's progression.

When Mom was first admitted she was borderline  as to receiving the care provided to her.  This was difficult as she memorized the codes to get in and out, fought to move back home and kept playing (unknowingly) upon our guilt for moving her furniture without her permission.

Since then, within the past 8 months, the progression of decline has been a whirlwind of change.  Her speech has become muddled and halting;  her thoughts the same; her interest in exploration and walking has all but diminished.  She hasn't the energy she once took for granted and enjoyed.  She sits, more and more often, in the confines of her room just looking out the window onto the garden, at pictures in magazines, books, on the wall, or reading letters and cards sent from those wanting to stay in touch.

Her conversational ability (which used to be immense, as was her ability to convince you she knew best - always) has been left behind in one of her drawers, amongst her other abilities which are no longer in sight.

She still has a slight bit of humor (her style) as when she sneaks wine from dinner and sips it in the morning telling all that it may be water, as she holds a wry smile across her lips.

This is the woman who wrote family history books on the different ancestors that made up her bloodline, then went and wrote one on our father's family history.  She loved genealogy.

All Mom's journeys - and there were many - are long lost.  She doesn't recall her lone journey to Alaska in the Toyota Dolphin (this began with a fellow traveler but that relationship ended in Mom booting her back to Washington), a cruise that took her to Denali, and over to the Seward Penninsula with her friend, Nadya.

She and Nadya ventured to Mexico, where Mom also spent time with Dad and other friends, many times, on vacations and explorations of the ruins as well as the geology and cultures.

She and Dad toured the States visiting relatives and exploring the monuments.  They also went to Europe on Elder Hostels (one of their favorite pastimes) meeting and visiting with relatives.  I, too, and my Uncle Pete took journeys to England, Scotland and Wales with her - she has no recollection.

She went to Australia, New Zealand, Spain, Germany (for the Oberammergau event), Switzerland, Hawaii, Canada, among others.  She ventured to China, with her good friend Nancy,  and witnessed the building of the Three Gorges Dam, went to Tibet, and had some life-threatening events; yet to her none of this happened.  If not for her journals, these would not exist for future generations.

Yes, Mom kept journals.  It is remarkable to read her musings on life as she saw it.  There are portions that would be better left in the ether, and in time could provide fodder for interesting discussions.  She began these once her mother was diagnosed with Alzheimer's.  And yet, none of that articulate and able woman surface.

She was also a voracious reader.  She would sit while listening to music and enjoy a good book and chart her thoughts for book groups and friends.  Then she would up and take a good walk, whether with a group on the Olympic Penninsula, on Cannon Beach or alone wherever she found herself (Although she did find big hills somewhat discouraging).  These are far from being abilities any longer.

So, one might ask, "How's your mother?"  and I challenge you and others to help create an appropriate, yet brief, response.  

I say this, not in bitterness, but in wanting to curate an accurate response that allows the questioner to be aware.  

Monitoring Results, and Maybe Some More Things to Consider....

It has been a week since I wrote with the list of items up for monitoring with Mama.  And, we have some results, and some data that keeps us in the dark.  Oh well.  Something is better than nothing.

Being concerned about Mom's sleeping patterns, we discovered she did not like anyone taking a gander to see if she was  during the night as it woke her; and as we were trying to ascertain whether she was up multiple times or what was happening, this did not bring closure.

Someone did mention a Nannycam but please - who do you know with some semblance of dignity would do that to their own mother?!

The sleeping patterns we were able to study were the ones from 0630h to 2200h (for those of you who daren't calculate the times, that's 6:30 am to 10pm).   She was normal.  Hmmmmm.

Next came her exercise.  She has been having regular physical therapy daily - but it has been (from what we can find in the records - the therapist had left already for the day) mostly upper body.  Mom doesn't want to walk very far;  from past experience I've noted that once she's out and complains about her back you steer her to the nearest bench (typically about half a block) and distract her with the plants.  This has worked in the past, and she actually begins to re-align with the rest of her body (or so she tells me).

One day Mom experienced 120 minutes of exercise, and that was the  Friday she was up in the middle of the night frantically seeking her feverish baby, and the day before she spent Saturday in her night clothes in her room all day; she would have spent the next this way, as well, but for my coming over and spiriting her to Jean's.  

That piece of the puzzle came together quite nicely, don't you think!?

Her stockings, I made mention of yesterday, but they seem to warrant watching - in fact sometimes they put them on her 4x a day only to have her remove them and tell people they aren't hers.  Part of me believes she likes the attention she gets, as well as the touch of the person putting them on.

There has been speech loss, and this has been more than noted.  She is growing frustrated and has, apparently, made mention of it to others.  She is frightened and concerned that her mind isn't what it once was - but for her sons she will show no sign of this concern - and yet it comes out in her interactions with the ones she sees frequently.

Bathing is still an issue, but this is something they're working on, staff-wise.  I hope they find a resolution.

Knowing she's in good hands makes this a much easier pill to swallow.

Some Questions Answered? or The Week Ending 04/19/2015

As you may have read, earlier in the week, we were able to place some monitoring on Mom's behaviors to see what was happening with her sleeping, bathing, and exercise.

One issue that did come up, though, as well, was her locking her room door and continually asking for the key to re-open it.  As the holder of the key, I was reluctant to simply hand the only key over to her, so I did have one made to see if this would alleviate the problem.   I also gave one to my eldest brother, just in case.

So, not much news on the monitoring, except that we did discover the reason she never seems to be wearing her compression stockings - they put them on and she takes them off.  They put them on and she takes them off.  This occurs 2-4 times a day.  That naughty girl!

She was able to get her hair done, though, and I believe she had a mani-pedi, although sluicing information from her is far from simple.  She did state, though, that she did see Barb, the beauty shop lady, either last week or this.  But details were not at all there.

On Wednesday, she had her visit from the RLC, and they visited for about two and a half hours.  She had no interest in Scrabble at all.  Now, whether or not this is a sign of the next stage of decline we are not hedging our bets.

They did engage in chatter and had a most lovely time.  At one point, there was something they were discussing about a girl they had known in their youthful days and Mom told Connie that Jean Flynn Mitchell was the person to ask (Jean was seated with the two, of course).  They simply smiled knowingly.  This is the first instance of Capgras with someone else, aside from myself, I have knowledge of.

Mom seems to be happy wearing her newer clothes - the pants both Tom & Peg bought and those I gave her, as well as some of the tops.

This evening, as the weather was warmer, she was garbed in a sweatshirt and shorts.  She was napping when my brother came to fetch her.  They took a languid drive to St. Paul, and then drove back to his house for dinner.

I'm not positive, but it seemed Mother was quite easily upset by anyone discussing anything without her input.  As my brother stated, "She kept speaking to us using the same phrases as when we were children!"  And this was true.  I was asked a question and was responding with a direct answer and Mom said, "Stop speaking as though you know everything.  Nobody likes arrogance!"  We were discussing a movie my brother and I had seen, but Mom hadn't.  She continued this way all evening, pointing her comments my way.  To be honest, after half a century, I'm nearly immune.

She did ask  for iced tea, at one point and was angry it wasn't wine.  Then, she was fine, for five minutes.  Then she demanded to know why we'd taken her wine. <sigh>

On leaving, she began hitting me with a magazine, as she felt I was being bossy in telling her we needed to leave (after she had stated time and time again she wanted to go home).  So, I asked my brother who had tried to intervene, during the journal beating, to try his hand with me out of the room.  She succumbed to his wiles, and began to complain of a bad back and walking to the car was just too painful.

Aha!  We gave her no choice.

On the way home she was quite congenial.  She remarked that she was going to have a bath when we returned and hoped she could walk upstairs to get her things (there is no "upstairs" for her where she resides).  We watched the sunset behind us on the freeway and came into the gardens to admire the irises back at St. A's as we ventured to her cottage and room.

I had tried, earlier, to bribe her with a bite of chocolate in order to get her to leave my brother's, so I gave her one upon our return.  There was no drama about medications from her, and I do believe she enjoyed the evening, although it will be filed away in some corner of her brain that keeps new things.  That's okay.

Hopefully, Tuesday, I will be able to report on the monitoring from the past week.

Time to Monitor Some Behavior....

So, this week we begin doing some monitoring on Mom.

What does this mean?   It means we (the staff at St. Anthony's with some input from me) will be making some notations on behaviors, as well as attempting to have Mom begin renewing her basic activities.

Here are the four points we are targeting:

1)  Sleeping.

     Mom will be checked hourly to see how she's doing sleep-wise.  If she's sleeping too much during the day or if she's having restless night sleep.

  This is to determine what's happening with her at night while answering the questions about her behavior over the weekend (not willing to dress or go out of her room due to being so tired).   The catch to this is whether or not the staff monitoring her wakes her by simply opening the door.   
    We will take in the information next week and make some determinations. 

2)  Exercise.

      Mom will be strongly urged to have some form of exercise on a daily basis with her exercise nurse.  Even if this means using her dinner wine as bait.

Mom really needs more exercise.  This could alleviate the lethargy and, perhaps, the edema she's been suffering from of late.  The wine is a treat, not an entitlement so there's no actual punitive endeavor there.   It may have many more benefits.  We will see where we are in a week. 

3)  Edema.

   Mom must be elevating her legs and wearing her compression stockings on a daily basis.  For some reason, which has been quite unclear, she seems to not have them on - and it may well be that she takes them off herself.  She's naughty that way.
    However, the swelling was too much last Monday, and it continues, although we've gone through this before.  We'll be checking on this with regularity.

  Edema can be a sign of kidney failure, liver failure, as well as be a lead up to congestive heart failure.  The stockings work to force the blood of her vascular system to move and be more effective and efficient - thereby increasing the blood flow. 

4)  Bathing.

   Arrrrrrg!  I've read so many articles and blogs about dealing with the unwillingness to bathe.  To be honest, I believe it's a control button.    While Mom is still garbed in her new togs, we aren't sure when she last bathed.  We may have to use something as bait (such as wine, again).  We'll be watching the progress and see what methods work this week.  Maybe we can bribe with chocolates....
   Not bathing may not only be a rather filthy and smelly affair, but it can lead to some other problems which I'd rather not speak of here.  Let's just say it's not only uncivilized, but something a woman of Mother's purport shouldn't be omitting. 

Well, on another note, she may be having her hair done this week, as well as a mani-pedi (that's manicure/pedicure for those unsure).  That may make quite a difference in her affect.  Next week should bring some data we can use or dump.

Stay Tuned!

Has One of These Days Arrived? Not quite yet - or the Week Ending 04/12/2015

A fretful but interesting week.

Monday, my brother, Tom & his wife, Peg, came down from Seattle to visit Mom.  I called ahead and told them to tell her that if she didn't take a shower there'd be no wine or ice cream for lunch.

It worked!  She skedaddled right in!

When they arrived, they were concerned by the swelling in her legs.  In fact, the edema was so bad they could barely squeeze her feet into her slippers.  But they did and off they went to lunch.

The visit was pleasant, but they noted that Mom wasn't always coherent and mumbled a great deal.

After they dropped her off they went shopping for clothes.  They bought pants, shirts, and a fleece type top.  They handed them over to me to make the attempt to have Mom try them on.

Wednesday, the RLC came to visit.  Mom kissed Connie on the cheek and then Jean (after Jean made mention of her omission).  Mom seemed quite tired.  She'd been to Mass earlier in the day, and this seemed to have sapped her energy.

They were able to play 3 rounds of Scrabble when Mom decided to put all the tiles away.  She had the lead score, 37, but the others weren't far behind with scores in the 30's.

The ladies trotted off to allow Mom some rest.

Friday night Mom arose and began a frantic search through the cottage for her baby who was sick.  This was something they hadn't seen Mom do.  This was also a shock to me when I heard.

Saturday, Mom refused to come out of her room as well as change out of her night clothes.  She stayed in so they brought her meals to her.  She complained that she hadn't slept well the night before.  This is self-explanatory.

Today, I arrived and found Mom still in her night clothes.  I'm not sure if she'd taken breakfast.  When the nursing aide came to check on her Mom shooed her away claiming she was in the shower and wanted privacy.    Not quite sure she actually did bathe...

I brought in the clothes Tom & Peg bought and told Mom to try on the pants.  She did it!  Yes!  No arguments or excuses.  They were a tad blousy on her but they fit and they looked good.   Then came the shirts.

Mom said I should try them on first to see if  I wanted them.  Um, No!  She stated that lots of men were wearing them these days.  I glossed over this and gave her some time to try them on.  When I re-entered, she was wearing the fleece with no shirt on.  She looked small in the clothes, but she also looked great!

Mom looking sleepily dapper. 

And, too boot, she allowed me to put on a pair of the socks I found for her.  We were able to get her feet into her sneakers, and she was ready to rock the world!

Her edema was still present, but not as bad as it was Monday.  The staff told me it was quite alarming, but the next day it had lessened as it did each day since.  She wore her stockings each day, and this seemed to help.

We then went to Jean's and had a lovely lunch of Boeuf Bourgogne a la Parisienne with Brussel Sprouts and Egg Noodles (no, the sprouts weren't mixed in - they were on the side).  Mom had her ice cream with fruit cocktail as a condiment.  She was happy.

She spoke of many things and seemed lucid at times.  Dad is out of town on business, it seems, and my grandmother is so terribly busy that she isn't able to visit Mom all that often.   Mom's brother who died has apparently moved to Idaho.

There was an instance in which Mom mistook me for Dad and asked me how my mother was.
"She's sitting right next to me.  How is she?"
"You're not funny.  That's just rude."
"Well, who am I, then?"
"You're my son."
"So you're my mother."
"Stop that.  Don't play games with me."
This led to a distraction of "Wow!  Look at all that traffic!"  It worked.

To be honest, Mom was all over the place today.  She told me, in the morning, she hadn't slept well the night before.  Preparing to leave for Jean's, I asked her why she thought she wasn't getting good sleep.  She retorted that she could fall asleep in record time and slept soundly through the night, and I shouldn't go around making things up. <sigh>

Where will Mom be, mentally and physically in the next 6 months?  in the next year?  I honestly can't tell you, but I've a feeling this season of disruption will seem a happy place comparatively.

Is Dementia Inherited? Well, maybe ...if....

Pondering over an interesting or relevant topic that never seemed to appear, it suddenly hit me that I'd read in more than one place that there was evidence that there could be a predisposition to dementia.  I realize I've written about the risk factors in the past, but hadn't really looked into why dementia hits some families and not others, with the same rate of affliction.

My grandmother had Alzheimer's, and while it seemed relatively new, at the time, it was a source of bewilderment for all those involved.  Of course, there was denial, as no one in our family had, insofar as we know, had such an affliction before.  There was confusion, as well, thinking there was something no clicking or that my grandmother had a reaction to medication, a stroke, or any of a myriad of possible causes.

It really wasn't until September of 1983 that they were given a diagnosis - Alzheimer's.  At that time, it was a relatively new diagnosis, one that people had heard of but knew very little about.    Mom took this diagnosis as a scarlet 'A' upon the family.  Perhaps it was fear that she could fall into the same diagnosis, or that it meant that our family was prone to some mental defect;  this would last even into the present.

When the "odd" began to present itself to us, we began wondering what was really going on.  Our grandmother had never had hallucinations, and she was very determined; after being moved into Mom & Dad's house she would take nightly walks with her dog back to her home, being picked up on the other side of town in the middle of the night, or in the middle of Highway 26.

Mom, though, didn't have that type of energy, but the dementia was certainly there.

Mom began to cloister herself.  She began to not have the energy to continue with the bridge games, hikes, pickle ball, book groups, or even regular housework.  There was a time when she began to walk and was stricken with great pain and loss of breath just a few doors down from her home.    When I was able to get her in they performed a brain scan, but the intern stated that she showed a typical amount of brain matter for someone her age.  There was something that just didn't sit well, but I let it go.

After her diagnosis, Mom was raring to go home.  She hated St. Anthony's as it wasn't her home, and she needed the familiarity of her life.  Steadily, she began to accustom herself, but it wasn't without a fight.

While there, my cousin, daughter of Mom's cousin, Alice, came for a visit.  I thought it very kind of her.  Then, she phoned me and told me she had come to scope out the facility for her mom.  They hadn't received a diagnosis, yet, but she had begun presenting sure signs of dementia.   Later, in October/November, she had a diagnosis that mirrored Mom's.

Now, Alice was a very active woman.  She coached, she hiked, she led the active lifestyle that, even in her later years, made everyone believe she was indestructible.  And yet, there she was.  My hope was that she and Mom could be housed in the same facility as this would give them each other, but it was not to be.  Since Mom had been brought in the list grew of those wanting placement, and Alice would be number 18 on that list.  Luckily, there was someone in charge of another facility who knew Alice from all her work with the schools and church in Astoria who brought her into their memory care as quickly as possible.  This was a godsend for her family.

So, why did both suddenly become stricken?  In truth, I never saw nor heard anything about or from Alice that would trigger suspicions.  As a matter of fact, she and Mom's other cousins seemed to voice concerns about Mom in the past few years.  Mom would play tennis at the beach then need to nap.  They told me she wasn't her regular self - but we hadn't noticed anything different except age.

To add to the mix, there was our Uncle Larry, who became stricken with Parkinson's a few years back.  Mom thought this odd as there hadn't been anything in the family resembling this disease.   I always thought it may have been jostled when his head was struck while being hit by a car (this happened at Cannon Beach, OR).  He lived for several years before losing his ability to walk on his own, and then quickly degenerated until he died a few months later.

The question then lingers - did they inherit this disease?

 Is there a gene that makes one more susceptible in one's family?

We know it's not a bacteria/virus, so there wouldn't be any way to "catch it".

But  Mom and Alice had something in common:  They were both caretakers.  Uncle Larry wasn't.

Mom had cared for her mother suffering from AD and my father with emphysema.  Alice had cared for her husband and his disease until his death several years ago.  My uncle had done no caretaking in his life.

Studies demonstrate that the stress from such intense caregiving can make one more vulnerable to dementias.  The stress can take its toll on the mind weakening the immune system and creating a level of chemical interactions that can increase the odds of developing a form of dementia for the caregiver.

Also, if you have had an occurance or two in your family, you actually may be more susceptible to the condition.  

There are studies, currently being held, and others that are holding to the continuing hypothesis that some families may have a mutation or abnormal genetic "hiccup" which can make those in the families more susceptible to LBD, AD, and Parkinson's.

According to JAMA (Journal of Neurology) in September of 2012 ( The Genetics of Dementia with Lewy Bodies)  there is evidence that this may be the case.  While the literature is interesting, but clinical, the conclusion is for more studies (as the disease is still considered "newer" than AD in the research and diagnostic sense) to determine more.

For some, this can be disheartening, but for the pragmatic, it may mean they need to ensure their house is in order and they have permission to begin to live life as well as they can, no matter the outcome.

For us, and others related to us, there is that chance.  It began with one, and then Parkinson's emerged, followed by the LBD.  While none is waiting with open arms for the diagnosis, it's always better to be aware and accepting, to know and move with the tide of the condition, than to deny it and not be able to fight with the right tools.

Sources:

Alzheimer's Reading Room:  Genetic Predisposition to Alzheimer's:  10 Things You May Want To Know

Dementia Today:  Dementia and Genetics

Everyday Health.com:  The Dementia Caregiver's Risk for Dementia

JAMA Network:  The Genetics of Dementia with Lewy Bodies

Researchgate:  Genetic Predisposition in Dementia

And the Beat Goes On...and The Week Ending 04/05/2015

Another rather uneventful week for Mom.  However, she did have longer visits than usual.

Connie & Jean came to pay their respects on Wednesday.  They had a wonderful chat, and Mother read a letter to them she had received (although they weren't quite sure how long ago - Mom keeps many at hand from last year, and places the newest ones in a stack that she goes through from time to time).  There was no Scrabble just the RLC chit chat.  After a little more than 3 hours, they parted and Mom made no move to leave with them.

This evening Mom was driven through Canby, Newberg, Sherwood, and then to my brother's for Easter dinner.  She seemed mellow, but much of her old feistiness was also quite present.

She continues to begin making statements that segue into other remarks, such as:
     "Those roses are quite beautiful but you know that some people get into terrible money trouble if they don't watch out!"  Where the latter part of the statement came into being is beyond me.

She was quite confused in her speech but was able to take part in conversations - not anything lengthy but still she kept up for a few minutes.

She wondered if my brother and his wife (now married for nearly 40 years) had ever married.  We assured her they had, but she had her doubts.  I finally stated she could ask them tomorrow, as they will be taking her to lunch.

She was also confused about my brother's house - at first stating it was hers, then asking how long they planned on staying this evening - if they would leave with us or stay a while longer.  Nothing truly penetrated her confusion on this.

I asked her if this were her home and she told me it wasn't.  She said they lived in another for so long, but they moved into it quite slowly - in fact, I may not have been born yet, and Lawrence (the eldest) was still quite young when they first proceeded to move things in.

It was obvious she had gained a little more weight, but she was wearing cleaner clothes and different pants from before.   I'm not sure about her bathing, yet.  That's something that needs addressing this week.

She spoke on the way back to St. A's about how lovely the dinner was and how good Kathleen and Lawrence were.  She truly enjoyed Megan and Anthony (Kathleen's daughter and son-in-law) who joined us for the repast.

When we made it to the first cottage (after hours we need to walk the length of the facility, then enter the first cottage and head down the hallway to the second where she lives) she must have been quite tired, as she told me she was going to her room - but then promptly did a turnabout as she didn't see it.

We went to her cottage and her room, she began slinging the pillows off her bed in preparation for sleep.  She was done in.  It was quite an adventure for her tonight, and she was out for over 5 hours!  And she didn't argue about her pills, either.

I'm not sure about what this week will bring, but as her speech and her cognition decline it's good that everyone is quite understanding and willing to play along with her in a good-natured manner.   It makes all the difference!