Friday, March 29, 2013

All Over the Place

Lyn's bowling scores this past month are creating an interesting pattern in our on-going graph.


Her point spread has gone from a low of 84 to a high of 151.  She's having a good week followed by an off week.  We know she's had more changes recently, like the fact that she now needs help getting both shoes tied.  We'll see if these score patterns continue.

In the meantime, I encourage you to watch this slide show on BBC News in connection with the publication of the book Love, Loss and Laughter by Cathy Greenblat.  It speaks to the continuing need to treat individuals with dementia with respect for them as a person even when they are no longer able to communicate in the same ways they once could.

Thursday, March 28, 2013

Carmustine


One of the news topics in the world of Alzheimer's this week is the use of Carmustine, a compound related to mustard gas that is used "as an akylating agent in chemotherapy", as a possible treatment to reduce the buildup of amyloid beta plaques in the brain.  The investigation into Carmustine was initiated because it has been previously noted that cancer patients have a lower rate of Alzheimer's and Alzheimer's patients have a lower rate of cancer. 

Carmustine has been found to reduce the plaques in mice models by up to 75%.  The dose needed to achieve this is lower than the dose currently used to treat some brain cancers.

It is an interesting possibility.

Wednesday, March 27, 2013

We Know What She Was Thinking

Mom writes:

I knew I forgot to tell you something.  At PBR, I pointed out to Lyn when the cowboys were getting ready and were at the chutes.  She gave me a slide glance and said "I want one."  
"You want one?  What, a cowboy?"
"Yes" was whispered.  
I tried not to laugh and asked why, what would you do?  
"Take him home."  
I then got The Look.
I turned toward our neighbor who went with us and was laughing, trying to tell her.  We agree that if Lyn gets one, we do too.  I promised I wouldn't hurt one.  
She kept saying she "could have one."  I agreed then pointed out something else.  Didn't work.  
Her look told me what she was thinking!  

Tuesday, March 26, 2013

Saturday's Best Line

"I've close my door so you don't think you have to go in there to clean."

She clearly was thinking about Mom and the effort she puts into keeping the house in order.

Monday, March 25, 2013

Bull Riders Galore

Mom got tickets to take Lyn to the PBR championships at The Pit yesterday.  It was 2 1/2 hours of LOUD excitement.

Lyn whooped, hollered, cheered and clapped her way through the entire event.  She was enthralled and excited.  Mom was entertained by a little three year-old boy who flirted with her through the entire event.  She had a wonderful time and didn't get confused or scared.

Mom bought Lyn a PBR shirt.  Lyn says it is different than the one we got her for Christmas.  Lyn bought herself a program "since it was only $10!"  Lyn reports The Pit was full.  She told me that one of the bulls tried to climb out of the shoot.  One of the bulls fell over and the rider stayed on through the fall and the bull getting back up.

When the event was over, they hurried home so that Lyn could eat an early dinner before the event was aired on TV.

Lyn decided that the next time she sees our Uncle she's going try to make a deal with him.  She'll pay for the tickets if he takes her to the event next year.  Sounds like a deal to me.

Friday, March 22, 2013

Weekend Plans


Lyn has big plans for this weekend.  She's been planning this for weeks.  

On Friday night, she'll go out as she usually does.  On Saturday, we will speak on the phone.  She's advised me that I have to make sure the call is early enough in the day to not conflict with her viewing of the PBR competition.  It is at The Pit in Albuquerque this weekend.  They will be airing the event and she's not going to miss it.  On Sunday, Lyn and Mom have tickets to see the championship rounds live at The Pit.  

She's so excited she's marking the days off on the calendar.  

The best part?  They'll be home from the event before it airs on TV that night.  She'll get to watch it a second time from a different angle!

Thursday, March 21, 2013

How to Look at Things

Last night, I called Mom to check up on the two of them.  In the process, Mom asked about my visit to the doctor inquiring about immunotherapy for a newly discovered allergy to bees.

Mom apologized to me, saying she was sorry I got all the crud in the family hand-basket of DNA.  I laughed it off saying that I don't have it, whatever IT is, as bad as other people.  We both agreed that no matter what challenges we face, it could always be worse and is for someone else.  Mom stated "That's just the way we have to look at things."

Lyn was listening in, of course.  We both heard "I don't have to look at things that way.  I look at look at things the right way."

Wednesday, March 20, 2013

Subdued

Lyn's been subdued the past couple of days.

She's sleeping more again and is showing less interest in some of her favorite activities.  She ruled out the puzzles earlier this week.  Yesterday, she started showing that she's stepping away from solitaire on her computer.  She asked Mom if the game was available to play.  Mom told her it wasn't but that Mom would help her turn on the computer and get the game going.  "No, I changed my mind.  I need help with it."  She has asked for help the last several times she wanted to play.  She has played solitaire alone for years and no longer is able to do so.  She changed the subject and hasn't mentioned the game since.

When I called last night to check on them, Mom described how subdued Lyn's been.  Her sleep is back up to 12 to 13 hours uninterrupted.  Mom actively has to wake Lyn.  She's sitting and staring off into space more.  Last night, she was bathed by 4 and had eaten dinner by 4:30.  She was fighting sleep by 5:30.  Mom convinced her to stay up at least through Wheel of Fortune when I called.  The show ended and Lyn announced she'd changed her mind.  She was going to stay up.  She stayed up to listen into the phone conversation.  When I hung up, she went to bed and was asleep in less than 30 minutes.

I wonder if the increase in sleep and the more subdued behavior in Lyn is a bit of depression resulting from her recognition and frustration of her changing brain.  While the previous evaluations of Lyn ruled out depression as a cause of dementia-like symptoms such as the memory loss, this doesn't rule out her current emotional state.

Additional Information:
Depression in Alzheimer's Patients Associated with Declining Ability to Handle Daily Activities

Tuesday, March 19, 2013

Her Face

Lyn's face is changing.  I don't know how else to describe it. Here's what I saw when we were speaking this weekend.


Forgive the poor quality of the screen capture.  My Skype feed isn't always clear and I grabbed a screenshot while I could.

She was looking at herself as we were talking, thus, she's a little angled away from the camera.  However, notice the mouth.  It looks small and downturned.  In the course of 5 or 6 sentences, she had to wipe the drool from her face 4 times.  Her cheeks were not animated during our conversation.  Her eyes never looked up or really focused and her face seems puffier and more slack than it was even two weeks ago.  Notice the puff at her temple and around her eyes.  She was not crying and had not cried prior to our conversation.

If I didn't know better, I would almost wonder, from the lack of muscle activity in her face, if she had suffered a stroke or two.

Monday, March 18, 2013

Get Rid of Them

Yesterday, after our call, Lyn sat down to work a puzzle again.  She pulled out a 500 piece puzzle two weeks ago and had spread it out on the dining table.  No pieces were together.  Mom sat updating Lyn's case management book of weekly reports at the table beside her.

It was not going well.  Lyn's frustration increased quickly and pretty dramatically.  She started grumbling.  Mom suggested the puzzle get put away.  Lyn burst into tears.  She covered her face with her hands and sobbed.  "I hate the way my brain is changing!  It won't let me finish it!"  Mom just got up, walked around the table and hugged her.  There was nothing else she could do.

They agreed that Lyn's brain doesn't work the 500 piece puzzles any more.  Nor does it work on the 300 piece puzzles.  Lyn decided "Let's just get rid of them."  Mom agreed.  While Lyn is at day hab, she'll remove the puzzles with higher count pieces, leaving Lyn with puzzles of 100 pieces or fewer.  Puzzles are now a source of frustration for her.

Friday, March 15, 2013

An Unreasonable Anger

Earlier this week, Lyn's case manager called to reschedule their monthly meeting.  The state had notified the agency that it was audit time and they had to reschedule a number of visits as a result.  In the conversation with Mom, they were able to reschedule for next week.

Lyn was instantly angry, nearly exploding with rage.  She had the meeting marked on her calendar for the original date and it MUST stay the original date.  Mom attempted to explain to her the reason for the reschedule.  Each time, Lyn just got madder and escalated her response.  Mom offered to update Lyn's calendar.  She refused.  Eventually, Mom had to get stern to stop Lyn from yelling.

Lyn wasn't done.  For hours, she grumbled and mumbled about the change.  She was unable to accept the change in schedule.  The only thing that made her calm was that I just happened to call to check up on them.

She and I chatted.  She was pleasant and never once mentioned the change in schedule.  When she handed the phone over to Mom, I could occasionally hear her in the background calling out to the television.  I think she was watching Wheel of Fortune.

I've suggested to Mom that she send me a text when Lyn gets like this so I can call and we let the call help redirect her attention and emotions.  Mom doesn't use text.  If she can slip into the bathroom for a moment, however, she could call me on the side and I'd gladly call her back.

This was the first time that Lyn couldn't be redirected or calmed down after an explanation or two.  Unfortunately, this is a common symptom of this stage of Alzheimer's.  We'll see this more often in the coming months.

Deep breath and keep the cell phone handy to call me anytime.

Thursday, March 14, 2013

The Castle

In March 2007, Mom and Lyn came out to Virginia for a visit over Spring Break.  Spring was setting in and a beautifully clear day presented itself for a trip into DC.

Smithsonian Castle
On this trip, we decided to visit the Mall, arriving early in the morning before many of the buildings were open.  It was just the three of us.  We walked along the open space, admiring the historic buildings lining it as we waited for the Natural History Museum to open so we could view the Hope Diamond in the Janet Annenberg Hooker Hall of Geology, Gems and Minerals.  

As we walked, Lyn would stop and snap a picture of buildings or trees she liked.  She was particularly taken with the Smithsonian Castle.  She took so long lining up her shot that decided to snap one of her without her knowledge.  

The morning was approaching the opening of the museum and we debated if we should continue on towards the Capitol Building or turn back to our final destination.  We were undecided.  Mom and I were joking about who had the best suggestion.  Something about the ground caught my eye and I yelled out "That settles it!  I win!"  On the ground, someone had drug their shoe through the dirt to spell out a name that just happened to be my nickname.  We all agreed that when the Universe puts an obvious sign at your feet, you win.  We turned back to the Natural History Museum, laughing and asking "What are the chances of that?"

Lyn was completely uninterested in the Hope Diamond or anything within the museum itself.  Her interest ended when we walked through its doors.  Regardless, we all had a good day.



Wednesday, March 13, 2013

Saudade

The other day, Mom wrote that her "heart was heavy" for recognizing another change in Lyn but she knew it was going to be a good day because Lyn was happy.  The two emotions conveyed by her thought have been sticking with me a bit.

There seems to be no word in English to properly convey these conflicting emotions.  The word "ambivalence" doesn't seem to do it justice.  Ambivalence is the "coexistence of positive and negative feelings...drawing (you) in opposite directions."  It seems to lack the weight and depth of the heavy heart.  Perhaps we've come too far from the original meanings of ambivalence because it seems more closely related to apathy than what I sense from Mom.

Perhaps we can be so bold as to borrow a word from another language?  Does "saudade" apply here?  Saudade is a Portuguese word with no direct English translation.  Saudade conveys a deep sense of longing for that which is lost.  It is nostalgia wrapped in pleasant yearning.  While saudade is typically thought to be felt to a lost lover or homeland, I think it may apply here to a woman who is watching her child become lost, who remembers with fondness and joy the child who once was and who recognizes the pain resident in the future.

Tuesday, March 12, 2013

Scots Guard

While they were out on the town this weekend, Mom and Lyn took in another show.

Last week it was a ballet version of The Wizard of Oz.  Mom said it was a bit disjointed and would have been confusing if you weren't previously familiar with the story.  Lyn enjoyed it nonetheless.

This week, they were able to see a performance by members of the Black Watch.


The audience with packed with kilts of every color.  It was a matinee performance which was completely sold out.  The stage was filled with the pipes, drums and dancers.  Lyn loved it.  Mom loved it.  Lyn cried at one point, reason unknown, but was able to compose herself after a few moments.  

Monday, March 11, 2013

They Don't Tie Right

Lyn has started sleeping longer hours again.  She's just off her period and yet the hours of necessary sleep have increased.  It seems as though she has these longer sleeping hours in times when she's showing more decline.  Along these lines, Mom wrote on Friday,

"From the position of her bathroom door, I knew she hadn't gotten up during the night.  She was in a deep sleep when Nikka and I went into her room."

Mom needed to wake her because she'd already been asleep for over 12 hours and they needed to get ready for day hab.

"After being up a while, she asked if her balloon shirt was clean.  'No, you wore it yesterday.'  Keep in mind that there are several short sleeved shirts hanging in her closet but she didn't think she had clean ones.  I asked if she wanted me to help her.  There was obvious relief in her voice.  'Yes please.'

When she came in the living room to put on her shoes she mumbled that 'They don't tie right anymore.'  I just got up and stood in front of her.  She put her foot on my leg so I could tie her shoe.  

My heart is sad but she's in a good mood.   So, life will be good today."

When I visited in August, Lyn could tie both shoes.  In December, I noticed that she could tie one shoe but not the other.  It is now March and she can no longer tie either shoe.  

She still refuses to wear shoes with velcro closures.

Thursday, March 7, 2013

Not Dementia

On the way home from day hab earlier this week, Lyn turned to Mom and said "I don't have dementia."

"You don't?"  

"No.  I don't have it cuz I don't want to.  I just know my brain is changing." 

"OK.  Not a problem."

Wednesday, March 6, 2013

Tuesday, March 5, 2013

Staying Positive


There are times when I speak with others about Lyn and there is, inevitably, an expression of condolences for her diagnosis.  I am appreciative of those expressions even when they are accompanied by a statement declaring Lyn's situation as tragic.  I don't see her Alzheimer's as a tragedy.  It is not a cause for extreme distress or sorrow. 

Tragedy is the accident in New York earlier this week that took the lives of a young couple and the child they were expecting.  Tragedy is the abuse my youngest survived before coming into foster care and into our lives.  

Lyn's life and the approaching end of her life are not tragic in much the same way that our Grandmother's passing was not tragic.  They lived.  They worked to their potential.  They achieved what they could or what they set out to achieve.  We may want think that Lyn's life is tragic because she is only 42 years old or because she was born with intellectual disabilities.  But, would she consider her life tragic?  I don't believe she would even if she was able to grasp that concept.

Lyn is, fundamentally, a happy person.  She adores being the center of attention.  She loved her job and seems to have no regrets about not working any longer.  She enjoys going out, being with friends and bowling.  She does not sit around and mope.  I don't think she's got the time to do that.  

I would be lying if I said that Lyn's Alzheimer's and the changes it is causing do not cause us grief.  They do.  We ache to see her struggle organizing her thoughts or to see her using just a spoon to feed herself.  However, I am comfortable in saying for both Mom and myself that we would not change this course she is on.  

This disease is terminal.  There is zero percent survivability or remission.  So, why struggle with it?  Why rage against it?  Struggle and anger do not help Lyn and they do not help us.  Why not, instead, choose to be positive and help her enjoy her days as best as she is able and to enjoy them as she chooses?  

If you want other perspectives on the deliberate decision to be positive in the face of a terminal diagnosis, consider watching a video from the "My Last Days" series produced by SoulPancake.  I particularly like the one about Christopher Aiff.  If you do decide to watch, have a tissue ready.  You might need it.  


Monday, March 4, 2013

Introducing a Friend to the Bosque

Mom and Lyn were visited this week by a friend from Texas.  He's well aware of Lyn's dementia and her intellectual disabilities and was prepared to go with the flow.  Lyn, however, decided that she would put her best behavior forward because she was able to help play tour guide around town.

Thursday night, they were trying to decide what to do on Friday when Lyn suggested that a trip to  Bosque del Apache might be a good idea.  It took her about 5 minutes to get her thoughts organized enough to make her suggestion clear, but she got there and their guest was patient through her process.  She loves going out to the Bosque and they recently hand to cancel a planned trip due to weather and illness.  Well, they all decided Lyn's idea was great and plans were made.  They were to pick up their guest from his hotel at 7 am.

They arrived at the Bosque mid-morning and were surprised to learn that the majority of the Sandhill cranes had already started their migration to their nesting grounds in the North.  The winder had been warm enough that the cranes had left early this year and only about 20 remained.  They were able to spot the cranes.

The best time of day to visit the Bosque if you're there to really see the wildlife is in the gloaming hours.  Dawn and dusk bring the most activity as the diurnal animals and nocturnal animals trade off.  Despite not arriving at the crack of dawn, they were still able to observe quite a bit of wildlife as they walked the Farm Loop trail.  They spotted quail, three coyotes, a Bald Eagle, three white-tailed deer, a Blue Heron, Canadian and Snow geese.  One of the coyotes was being dive-bombed by several crows.

Bosque - March 2001


Lyn was happy as she could be.  Their guest was interested in the refuge, having never been there before and was pleased to see a number of animals he'd never been able to see before.  Lyn spotted the first two coyotes, but he caught on and was the one to spot the third.

On the way back to Albuquerque, they stopped at the Buckhorn for lunch.   It might not look like much, but the green chile cheeseburgers make it worth the stop.

Update from Mom:
"Once down (at the Bosque) she pulled out the glasses and pointed out the geese and ducks.  She was so excited to spot the first coyote.  She squealed and told me "back up, back up quietly."  So I did and there he was in the tall grass looking back at us.  We watched about 2 minutes then he turned and disappeared in the grass again.  She pointed out hawks at each turn."


Friday, March 1, 2013

Bruges


The city of Bruges in Belgium has a population of about 117,000 people.  A little over 2,000 of the residents are documented to have dementia.  The city is working to become a more supportive and safe environment for those with dementia.

Bruges's efforts include a database for the police which provides demographic information about the patients in case they need police assistance.  A symbol which looks like a red, knotted square of cloth is being put up in public places to indicate havens where patients and their care providers can seek assistance.  The city-wide efforts are designed to help reduce the stigma associated with dementia.  

Bruges has been recognized along with nine other initiatives for these efforts and has won a Living Well with Dementia 2012 EFID award.   

I would love to see initiatives like these here in the U.S.