Monday, October 31, 2011

Regionals

Lyn competed in the Regional games for the Special Olympics bowling.  She maintains an average score that ends up seeing her compete against just one other athlete.  This athlete and Lyn have known each other nearly their entire lives and have been competing against each other for nearly as long.  Lyn did fairly well on Saturday.

 
Her scores were 115, 103 and 116.

She was thrilled.  Let's let her tell us why.

So, Lyn, why are you happy with your scores?


A silver medal!!  Good job!

Despite the lighting, I assure you it is a silver and not a gold.  I totally thought it was a gold until Mom said the word "silver."

The above image was captured during our weekly Skype session.

Sunday, October 30, 2011

Tackling a Project Through an Off Day

Lyn's mad at herself for having an off day on Thursday.  Her bowling scores below are just one indicator of how off her day was.



Aside from bowling, Mom and Lyn tried to tackle the second wall in the garage.  Mom jokingly says that at this rate they'll have it done by next Spring.  Afterall, it was too hot this summer to paint the garage.

They began work on the second wall by pulling everything wayw from the wall and then sweeping up all the dirt that has quietly accumulated over the years of their living where they do.  Given that they live in a desert, I suspect it was mostly a very fine red dust that had settled there.  Mom showed Lyn what she was to do with the paint roller.  Remember that just the day before, Lyn handled the roller with ease and followed directions pretty well.  The second day was not so easy.

Mom wanted Lyn to paint the lower half of the wall while Mom worked on the upper half.  Mom handed off the roller, showing Lyn where to paint and then turned to get her own roller loaded with paint.  When she turned to the wall, Lyn was painting the upper section; not the are Mom had just indicated.  So, Mom stopped and watched.

After a minute or so, she tried to redirect Lyn with "I thought you were doing down here."  Lyn looked at her as though she had spoken in another language.  Despite her confusion, Lyn turned to paint the area indicated and Mom watched again.  Lyn painted the same spot about six times, only moving if Mom directed her to another spot to paint.  It became a series of "Ok.  Now over here."  Lyn would continually paint the area and Mom would have to redirect again.  It took over an hour to paint a 7 foot wide section of the wall from top to bottom.  Mom states "She was having a very difficult time focusing on what I would say, the confusion in her eyes breaks my heart."

The day was cold and Mom had the garage door open about a foot for ventilation.  Using that as an excuse, she suggested that they stop for now.  The project is not associated to any deadline and can be dealt with as time and skills allow.  Mom anticipates painting while Lyn is out with her respite provider.

Saturday, October 29, 2011

Tackling a Project

For some time, Mom has been thinking of cleaning and finishing her garage.  While she does store some stuff in her garage, by most American standards it is virtually spartan.  Can you imagine?  She actually puts her car in the garage daily and you have plenty of room to open all the car doors.  Shocking!  Then again, she drives a normal sized car and not an oversized vehicle like a truck or SUV.

This summer, she planned to tackle the project.  The, Lyn's diagnosis was issued and it threw everything for a loop.  The garage project fell to the wayside, understandably.

Mom and Lyn have had several months now to begin settling into their new normal.  They've had time to begin processing the changes which are underway.  They've definitely come to accept the reality of Lyn's dementia and they've started to look beyond the diagnosis and notice what else is out there.  So it was that earlier this week, Mom realized the garage needed cleaning and finishing again.

There were a number of things left over from their community yard sale sitting in the garage.  They loaded the items up and delivered them to Goodwill.  It was more than they anticipated. 

They started with the wall separating the garage and the house.  They pulled everything away from the wall, swept and started painting.  Mom gave Lyn a roller and showed her where she was to paint.  They worked together and finished the wall in good time.  Lyn was starting to show some fatigue so after the first wall, they wrapped up for the day.  
Lyn kept at it and was a big help to Mom.  Mom says Lyn worked hard and enjoyed what they were doing.  

Friday, October 28, 2011

Planning for Travel

The other night, Lyn turned from watching the PBR to ask Mom if they "are going down that river?"  It took Mom a minute to realize that Lyn was asking if they were planning to attend the Christmas on the Pecos light display.  Mom and Lyn went last year and had a very good time.  They rode a boat along the Pecos river and enjoyed the Christmas lights the homeowners have put up in Carlsbad, NM.

When Mom realized what Lyn was talking about, she asked if Lyn really wnted to go.  "Yes!  It was so pretty and we came home the next morning."  Mom looked it up and found that the season starts in just a month.  They went ahead and bought two tickets for the first boat of the evening.  Lyn is happy because not only will they be on the early boat, but it is the same boat, the Bela Sera, that they went on last year.

After they secured their event tickets, Mom started looking into hotels in the Carlsbad area.  Lyn spotted a picture of the hotel where they stayed overnight last year.  Mom pointed out another hotel with a lower nightly rate and Lyn panicked.  Mom says that Lyn's facial expression was almost terror.  When Mom promised to call the hotel they stayed at last year and not the one with the lower rate, Lyn began to relax again.

It will only be a one night trip.  However, it will be a good gauge to see if Lyn is still capable of travel to my home.  We can take this as a simple measure but not a guarantee.  While Lyn is starting to talk about coming out here again to visit, the reality is that her capabilities may change enough over the time between this trip and our normally scheduled June visit to make it impossible.

Until then, Lyn is looking forward to the Christmas boat ride on the Pecos.  She's offered to pay for part of the hotel room and asked "Do they take change?"

Thursday, October 27, 2011

Taking Dementia Along for the Ride

Traveling with Lyn has been a little challenging since her Sundowner's diagnosis a few years ago.  This summer's travel events gave us a hint that it is just going to get more challenging.

When you live your life trying to maintain a person's environment and schedule specifically minimize their change related anxiety, travel puts a wrench in the normal, mechanical flow of things.  The person is not in their recognized and secure feeling environment.  The person is out of their routine.  Because the person with dementia may no longer remember places that were once familiar, they may respond to a previously frequently visited place as though it was their first visit.

While we may consider the impact to the person with dementia, we may forget to factor in the impact to the care giver(s).  If the person with dementia is out of his or her environment, what will the impact be to the care giver?  Will the care giver have the means to minimize the amount of travel time?  Will the care giver have to deal with spontaneous emotional outbursts, wandering, resistance, or even physical outbursts from the person with dementia?  Will the care giver be able to get a night's sleep or will they have to stay awake to keep their charge from wandering off?

As a result of the complexities associated with traveling when dementia is along for the ride, there comes a time when travel is not recommended for the person who has dementia because it is so disruptive to the person's emotional, physical and mental well-being.  Dementia is definitely along for the ride and if you bring your loved one who has dementia with you, then you MUST factor in their ability to handle the trip.  It may not be wise to travel:

  • if your loved one gets disoriented, aggressive, or agitated even at home.
  • if your loved one has started wandering.  
  • if the increase in people, activity or change in places is going to cause your loved one to be fearful.  

If you are unsure how your loved one will respond, consider taking a short trip first.  A day trip or even a single over-night stay may give you the information you need.  Just be prepared to cancel your plans and go home mid-trip if necessary.


Additional Information Sources:
Travel Guidelines for People with Dementing Illness (PDF)
     Seriously, if you read nothing else, read the above link.  It is that good.

Traveling with Dementia
Dementia and Traveling

Wednesday, October 26, 2011

She has to go, now!

This weekend, we tried to have our regularly scheduled Skype conversation.  Unfortunately, my computer is no longer recognizing its built in camera.  My back up option didn't work as well either.  So, we kept our date and had a phone conversation with the hopes that my camera issues will be resolved before next weekend.

Our typical conversations involve me talking with Mom and getting the latest news that worth sharing.  At some point, the phone is passed to Lyn who then recounts her activities in the last 24 hours.  So, despite knowing that Mom sent me all the information of her day out with her respite provider, she tells me as if I've never heard it before.  This is fine with me.  Having the advance telling from Mom allows me to sift through and figure out what she's trying to tell me.

Lyn's accounts are rarely in a logical order, frequently don't have key details and tend to wander.  However, I've learned over the years to just keep asking her questions to keep the conversation flowing.  If I stop and let her lead, then we'll end up with a ton of "Yeah... Ok... Yeah...".  She always asks about my family, asks how they are, where are they and what are they doing.  If we're speaking via Skype, she gets face-to-face time with my children.  My husband makes cameos as he goes from one project to another around the house.

At the end of my time with Lyn, when it is obvious she's run out of something to tell me, I ask to speak to Mom again.  At this point, Lyn always calls out "She has to go, now!"  I have to laugh at this point.  I don't have to go frequently.  I am rarely suddenly needing to take care of something else.  When I have a call with Mom or Lyn, I try to not have something else going on so I can give them my attention.  Part of what cracks me out is that Lyn is often the one to decide that the conversation is over and that I "have to go, now!"  Sometimes, I learn that I have to go cook dinner for the kids or feed my dogs.  Sometimes I learn I have to go do laundry or some other household task.  I love it when she comes up with some task and assigns it to me as a reason for the conversation to end.  As a result of how frequently we talk by phone or by Skype, I can end up hearing this several times in a week.  It never fails to crack me up.

Excuse me.  I have to go, now.

Tuesday, October 25, 2011

A Busy Day of Respite

Lyn's respite provider had been ill last week.  As a result, they were unable to get together for several of their regularly scheduled times.  On Saturday, they went out together for a full day which wore her out.

They left at 9 for breakfast at Weck's.  Weck's is one of their normal stops if they are out for breakfast.  Lyn may not like eating breakfast, but by the time they get there, she's happy to eat a Bowl of Papas.

After breakfast, they headed over to a paint-your-own-pottery studio.  The mug she had made for their parish priest was recently broken and she was determined to make him another.  It took her a couple of hours to make her selection and paint it for him.  In a few days, the piece will be fired and ready for them to pick up.  If this mug is anything like her other pottery pieces, I can guarantee it will have a plethora of colors.

From there, they were off to the bowling alley.  She bowled 2 games only since there wasn't an special offer today.  Her scores were 122 and 120.


To wrap up their busy day out, they went to one of the casinos where she won 28 cents.  They even decided to eat at the casino's buffet for dinner.  She was thrilled!

Out at 9am and home before 7pm.  Bed by 8.  This is what a great day is like in Lyn's opinion.  

Monday, October 24, 2011

Hippotherapy

Years ago, Lyn participated in a hippotherapy program as part of the speech therapy she received through her high school.  She participated in the horse therapy program during her freshman and sophomore years there.  The teachers decided that this would be a good option for her and sent home a permission slip for Mom to sign.  The school had already established a partnership with a hippotherapy program for a number of their students.

Hippotherapy is the practice of using horses as an aid to a therapeutic session.  Participants in such programs may have cognitive, emotional or physical challenges which can benefit from the combination of receiving therapy while learning to ride horses.  Hippotherapy is used for a wide range of challenges including, but not limited to, Autism, visual and hearing impairments, brain injuries and even PTSD.


The horses were every well trained and accepting of the therapy participants.  You could describe them as rock solid.  The therapists could put a student on the horse, even facing backwards, and the horse wouldn't flinch regardless of the behaviors the student was exhibiting.  If a student was afraid of the horse or if they started to panic once up, the therapists would take the student down and then have them mount facing backwards.  For some of the students, this allowed them to grow more confident and comfortable before being turned to face forwards.

Lyn never had that issue and would mount properly.  Lyn would ride the horses while receiving her weekly speech therapy lesson.   After the riding session, she would participate the grooming of the horse she had just ridden.  During her session, she would have an assistant on either side and one at the head of the horse leading it.

She had ridden horses before the therapy sessions and has been able to ride from time to time since.  The picture above was taken at our uncle's home.  He's had horses since before Lyn was born.  He has hosted riding sessions for the family's children with all of his horses.  If Lyn wants to ride, he makes it possible.

Lyn's riding may have been limited to going around the paddock, but she loved it.  While it was hoped that she would have better speech therapy results as a result, Lyn had no memorable changes to her speech.  However, she had fun riding and enjoyed the social aspect of the therapy.

Additional Information Sources:
Horse Therapy Gives People with Disabilities Opportunities to Succeed
Horse Therapy Helps Youth Deal with Life Issues
Horse Therapy - Changing Lives

Sunday, October 23, 2011

Neuro-Psych Eval Session 3

Lyn had her third and final neuro-psych evaluation session on Friday.  She, once again, worked very hard and stuck with it.  She did better than Mom expected.  After the session was over, Lyn was asked to allow Mom to speak with the clinician privately.

In about two weeks, Mom will receive the written analysis of the evaluation.  In the meantime, the clinician wanted to share a few outcomes of the testing with Mom:

1. Lyn was delightful for the clinician to work with.

2. Her IQ is still about 61.  There's currently no measurable change in that score.

3. The clinician cannot give diagnosis of dementia because Lyn still engages in conversation with you and responds to questions. The clinician explained that clients usually come after their dementia has progressed to the point where they cannot engage and sit staring into space instead.  Even then, they may not be able to be properly tested because they may still remember things learned over the course of their lifetime which are still accessible to their long-term memory.  There is no real test for dementia.  However, the results of the evaluation can serve as a valid baseline for the next two years.  In the future, they can have another evaluation done for comparison.  

4. Lyn is not depressed.  The clinician disagrees with the neurologist and advises to not put Lyn on any anti-anxiety medications.

5. Lyn does not have behavioral problems.

The clinician confirmed that what Mom and Lyn's team are seeing is correct.  At this early stage of the changes, she encouraged Mom to be aware of the changes so that she can catch it when more occur.  Mom feels that her observations have been validated.

Saturday, October 22, 2011

An Off Day is Pretty Obvious

Lyn had an off day on Thursday.  Her bowling score reflects it as you can see below.



She was bummed about the second game and gave Mom The Look when Mom tried to reassure her that it was still good.  As long as she had fun it doesn't matter.   

Mom sees Lyn working hard to get thru the day when she's a bit off.  Lyn definitely realizes when she's off currently.  Mom doesn't want to add frustration for her.  So, she tries to take a step back and just provide some support and assurance that it is still OK.

Friday, October 21, 2011

Neuro-Psych Eval Session 2

Lyn had had the second test session on Wednesday.  She worked very hard from 10am until 12:30pm.  She came out of testing in an upbeat mood.  She didn't say anything about "stupid questions" or being told to not talk to herself.  She said they "played on the computer, finally."  

Apparently, the clinician is having a hard time realizing that Lyn is actually 40 years old.  She actually got out her calculator to subtract Lyn's birth year from the current.  When the results showed 40, she commented to Lyn "You really are 40!"  She's also commented to Mom that Lyn functions at a higher level than her IQ score would indicate.  She's surprised by this and yet compliments Mom for raising Lyn well.  She says that Lyn works very hard to complete a task even if she's struggling at it.  She puts in the effort because you've asked her to complete the task.  

When Lynn and Mom got home she said she was going to take a nap.  Mom asked if she wanted to be woken up or left to sleep until she wakes on her own.  Lyn said she'll decide and tell Mom when she gets up.  

Today is the last test session.  Mom will bring Lyn in at 10:30.  When the testing is completed, the clinician will review the results with Mom right then.   

Thursday, October 20, 2011

Filling Those Shoes

At an early age, Lyn picked out the shoes she wanted to fill.


They were a pair of well worn cowboy boots.

Wednesday, October 19, 2011

15 Million

15 Million

That's a big number.  The Earth's circumference is only 24,901.55 miles.  The circumference of the Sun is 2.7 Million miles.  The distance between the Earth and the Moon is 406,700 miles at the furthest point.  15 Million is too small a number to be the distance between the Earth and Mars or the Earth and Venus.

Apparently, there are 15 Million women in the US who carry a gun.  While I find that number staggering, it is not the statistic that we're here to discuss today.   We're also not here to discuss that Apple ordered 15 Million of the iPhone 4S.

15 Million is the number of individuals who are providing unpaid care for friends or relatives with dementia in the US alone according to the Alzheimer's Association's 2011 Alzheimer's Disease Facts and Figures (PDF).  Additionally, 80% of the care given to an individual with dementia is done so by family members.  The majority of care providers are women (60%) and the primary bread-winners for the family (55%).

So, 15 Million people are caring for a loved one with dementia.  They are taking on the incredible stress of the shopping, the personal hygiene, supervision and dealing with the paranoia and emotional outbursts.  They are working to make the environment of their loved one a safe, reassuring environment for their loved one.  They are advocating for their loved one with support agencies, medical professionals and other service providers.  They are doing all this while also tending to their other familial obligations AND trying to maintain gainful employment.  No wonder there is a high rate of fatigue and depression amongst our volunteer care providers.  They are doing all of this and getting no pay for it.

So why do the 15 Million step up in the face of the challenges to care for their loved one who has dementia.  The "loved" adjective comes into play here.  The care provider may feel a sense of pleasure resulting from providing care.  They may be trying to satisfy a sense of familial duty.  However, the amount of positive feelings they experience, do not compensate them adequately for the pain, suffering and risk to themselves they experience as a result of the care they provide.  In this sense, I contend that they are doing this work because they are fundamentally altruistic.  In Explaining Altruism: a simulation-based approach and its limits, Eckhart Arnold defines altruism as a trait or type of behavior that "benefits another individual at a cost for the individual itself without immediate or equal return."

Being altruistic in caring for someone with dementia does not make the care provider a saint or a superhero.  They are just another person like you and me.  The difference is that they see a need, believe they can fill that need and step up to do the work.  A common question, and one shared by foster parents, is "If not me, then who?"  If we do not step up to care for others in our lives, who will?

So, if you know someone who is caring for an individual with dementia, don't praise them for their herculean efforts.  Thank them.  Don't rush off to do something.  Stop and listen to them.  Offer up a hug and schedule a lunch date with them.  Offer up your own services to lend them a hand.  They may not accept, but they will definitely appreciate your awareness.


Additional Information Sources:
Explaining Altruistic Behavior in Humans by Gintis, Bowles, Boyd and Fehr
Altruism in Humans by Charles Batson

Tuesday, October 18, 2011

She Likes Her Cowboys

Last week, Lyn and Mom were in with their favorite stylist when the stylist took a call from a client who needed to make appointments for her and her husband's haircuts.  The appointments were made and the stylist commented to Lyn that she cuts hair for Travis Briscoe and his wife.  The stylist knows Lyn loves PBR which is why she shared the information.

When Lyn heard his name she became very animated and excited.  Lyn started telling Con about PBR and who all she likes to watch.  The stylist suggested maybe she could ask for his autograph.  She said he is so sweet and would do that if asked.  Lyn was wearing two shirts because she's always cold.  Mom had to encourage her for several minutes before Lyn understood what was being said.  There were too many steps for her to follow.  Mom was telling her to go take off the t-shirt so it could be left for Travis to sign.  Finally she got it and headed for the bathroom.  She handed the shirt to the stylist and showed her right where she wanted his signature; on the front, near her heart.


Travis and his wife's appointments were for the next morning.  So, that afternoon, Mom and Lyn swung back by the salon on their way to bowling.  The stylist pulled out the shirt and handed it to Lyn.  Travis  wrote on the front "(Lyn), God Bless.  Travis Briscoe"

Lyn is THRILLED!  She and I talked on the phone that night and she told me all about the shirt.  She doesn't know what she wants to do with it yet, but she knows she wants to keep it forever and not have his signature wash out.  I can guarantee she'll be yelling and clapping for him when she watches the PBR.


(Dear Mr. and Mrs. Briscoe.  In case you ever read this, we recognize you used her real name on the shirt.  We just don't use it on this blog.  Thank you so much for your kindness.  It is greatly appreciated.)

Monday, October 17, 2011

Neuro-Psych Eval Session 1

Lyn had her first official round of the neuro-psych testing on Friday.  Mom made sure she ate some breakfast before going "so the brain works best."  Lyn hates eating breakfast but she cooperated.

The session was to last about two hours.  Mom and I figured Lyn would last about an hour to an hour and half before declaring she was done.  We would have lost if we had placed a bet on it.  Lyn stuck with the testing for over three hours which extended over lunch.  When Lyn began the testing, Mom left to run errands, returning at the designated time about 2 hours later.  The clinician came out to where Mom was waiting and asked her to complete a VINELAND-Adaptive Behavior Scores.  Mom felt the assessment she was asked to fill out was basically not relevant because some of the questions were geared for infants/toddlers.  Mom is correct that the test is geared towards children.  Additionally, it is geared towards providing a standard against normal, average children.

(I have to question its use in Lyn's evaluation.  The intellectually disabled really shouldn't be evaluated against normative standards, even if you account for age adjustments.  They should be evaluated against their own skill sets.  How can you compare a 40 year old, intellectually disabled woman and, using a standardized and normalized test designed for children, come up with a meaningful assessment?)

The clinician said "She is a delightful young lady but she does have problems".  Mom's internal response was "WELL DUH!!!!!"

Lyn finished up and came out of the evaluation in an upbeat mood.  She had taken a couple of short breaks but had kept at the testing.  She began to tell Mom about the tests.  She was somewhat disgusted because she was asked to count backwards.  "Who ever counts that way?  I told her no, I count forwards."  She was asked if she knew the alphabet to which she responded "Of course.  I've known them since I went to school."  She was disgusted that they asked her the day, the name of the city and the state.  I bet The Look entered into the morning more than once.

The session, though a positive experience for Lyn, really took the wind out of her.  She prepared for bed by 6 and was asleep by 8 pm.  She was just exhausted.

She has two more sessions this week.  We'll report on what happens then.

Sunday, October 16, 2011

Chocolate Police - Part Two

About a year the chocolate police were introduced to Lyn, she and Mom came to Virginia to visit.  We decided to go to the Purple Cow for lunch.


The Purple Cow was a 50's themed diner which was known for its very purple vanilla ice cream.  It was the kind of purple that kids thought was amazing.  Lyn  liked the Purple Cow because she liked purple and the food was darn tasty.

We were sitting there eating our lunches when three Virginia Beach sheriff officers sauntered in for their lunches.  Lyn's eyes went huge and she got very animated.  She quickly finished her bite and announced in her best stage whisper (nearly a yell, really), "Oh!  You have chocolate police, too!!!"

The officers, two of whom were African American, clearly heard as their heads snapped around and their eye brows went up into their high and tight cuts.  Mom told Lyn to finish her lunch quickly because we needed to go.  I did my best to not choke on my sandwich.  For the rest of the meal, the officers kept eyeing us.

We finished our lunches and I told them to go on out to the car while I settled the bill.  I waited until they were out the door before approaching the officers.  I explained that Lyn is a special needs individual who is convinced that officers in brown uniforms were there to enforce the law that milk must be consumed with chocolate.  Their expressions went from wary to confused to amused.  I told them of how Lyn came to believe that there was such a special division in the police department and that it was about the only way to get her to drink milk.

The officers relaxed and chuckled as one of them said "Thanks for clearing that up.  We thought she was being racist."

Saturday, October 15, 2011

Chocolate Police - Part One

There was a time when Lyn didn't want to drink milk for any reason.  She doesn't like to drink water either.  So, she'd drink tea, Kool Aid, or Juice.  However, she didn't want to drink much at all.  Mom really wanted Lyn to drink more, especially milk because it was about the only source of calcium that Lyn would take.

One day, Lyn wanted to have some Oreos.  Mom told her that she needed to drink milk if she wanted chocolate of any kind.  She explained that there was a new mayor in town who was revamping everything.    The new mayor had set up a new division in the police department with the only purpose of patrolling and enforcing that people drink milk when they eat chocolate.  Lyn wasn't sure she believed it.

"Just ask your Uncle."  Mom told her because her Uncle wouldn't lie to her.

Lyn took her glass of milk and her Oreos out to the front room where she set them on the table.  She started closing the curtains and told Mom it was "to stay on the  safe side" from the chocolate police.  At that moment, as she was reaching to pull another curtain closed, a sheriff's patrol car drove by.  Maybe it was the motion of the curtains that caught his attention, he looked over and made eye contact with Lyn.

I don't know about the sheriff's officers in your area, but where Lyn lives, their uniforms are chocolate brown.


Lyn was nearly convinced.  Nearly.

That Sunday the visiting Monsignor, another priest and our Uncle came to dinner.  During dinner, Lyn turned to our Uncle and said "I want to ask you a question."  Mom knew what was coming and tried to head her off with "Now is not the time."  Not only did Mom get The Look, but Lyn dared a Snap-Point. Mom was caught off guard and sat back.  So, Lyn proceeded to ask about the new police division.

Our uncle immediately caught on and confirmed with "Yeah, I know a couple of them."  Grandma, across the table, nearly swallowed her false teeth.  Our uncle was clearly telling a lie and confirming a lie from Mom.  This was just awful with two Men of the Cloth at the table.  Monsignor jumped in and told Lyn that he knew them too.  He had a Snickers bar taken away because he didn't have any milk and was now under special observation.

Now, Lyn was really convinced.

On the way out, Monsignor hugged Mom and thanked for her dinner.  While his arm was around her, he said "I'll be happy to hear your Confession on Sunday."  She asked who was going to hear his.

Friday, October 14, 2011

The Amazing Brain

Our brain is an amazing organ.

It weighs about three (3) pounds and more than triples in size between the time we are born and when it stops growing at about the age of six.  The human brain has an average of 100,000,000,000 (100 Billion) neurons.  The brain is the most complex living structure.  The brain controls the functions of the rest of the body and receives all sensory input.  It is the seat of our personality, our decision making center and the machine which lets us walk, talk or think.  It can be rewired to pass functions from a damaged area to one that works.  It can even allow humans to learn to echolocate like bats.  And yet, it is mostly fat.

All of the brain's work makes it a very hungry organ.  It consumes about 20% of the energy our bodies spend each day.  A day thinking can tax you as much as a day of physical activity.

I would write more but my brain is tired.

Until tomorrow's post, here are Lyn's bowling scores from today.


She had a great day today.  Someone did something very nice for her and she's downright giddy about it.    I'll tell you about it tomorrow.

Additional Information Sources:
New Scientist: Introduction: The Human Brain
Brain Cuttings by Carl Zimmer
Portraits of the Mind: Visualizing the Brain from Antiquity to the 21st Century by Carl Shoonover
Neurologica Blog: Human Echolocation
National Geographic's Brain Games

Thursday, October 13, 2011

Ride A Little Horsey

In late 1972, my parents were transferred from Italy to Alabama.  They were back in the U.S. for good.  They were again able to take leave to visit our grandparents in New Mexico.  Grandpa was over the moon.

Each night of this visit, he and Lyn would stay up late and play until Grandpa was just too exhausted to go on.  He was used to going to bed at 7:30.  He definitely was not used to keeping up with her.  Grandpa introduced Lyn to a classic nursery rhyme:

Ride a little horsey way down town.
Do pray, Little Girl, don't fall down!


He would bounce her until his legs were ready to fall off.  She would keep climbing up after each "down" to get him to do it again.  Neither apparently knew when to stop and needed intervention to get to bed.


Sometimes, she didn't get very far.

Wednesday, October 12, 2011

Special Relationships

Have you ever been faced with an unfamiliar situation?  Have you handled that situation well?  Did you learn something about yourself as a result of that situation?

My sister was an unusual situation for my family, particularly my grandparents.  They were late to the marriage game, late for having their own children and were older than average when the grandchildren began to appear.  Grandpa was a cabinet maker who was born in 1907.  Grandma was a teacher who was born in 1911.  Our grandparents had their good traits and they had their challenging traits.  They were demanding parents, of that I'm sure, but pretty openly loving grandparents.

While it was obvious from the beginning that something was different with Lyn, I'm not sure at what point it was obvious to them.  What I do know is that they loved her from the start.  They decided to accept her and work with her.  They decided to support her efforts at Special Olympics and even came to some of her early competitions to cheer her on.  In short, they decided to face the unusual situation of Lyn and do what they could for her.

In 1971, when Lyn was just 5 1/2 months old, she and the rest of the immediate family returned from Italy for a visit.  It was her first trip to the U.S.  Lyn was too young to crawl.  So she rolled.  No matter where she started from, she ended up at Grandpa's feet.  He was thrilled!


Grandpa was not known for getting down and playing with children.  In fact, Mom cannot remember a single incident of him playing on the floor prior to this visit.  He was playing trucks with our brother when Lyn rolled over to get in on the fun.


When I look at the above pictures, I can just hear his voice, quiet and steady, as he would say "Yes?  Uh huh... Yes..."  It did not matter the baby, the time or the situation, if he was talking to a baby, the majority of the conversation would consist of "Yes?  Uh huh... Yes..."  It was a soothing conversation, one-sided, repetitive, but very soothing.

Tuesday, October 11, 2011

Quarai

Recently, Mom and Lyn took a day trip out to Quarai.  Quarai is a sister ruin to Abo and Gran Quivira.  All three are now part of the Salinas Pueblo Missions National Monument.  The Spanish established mission churches in all three pueblos.  This particular mission served as the center for the Spanish Inquisition in New Mexico.  Dought and increasing pressure from the Apache eventually are what led to the pueblos being abandoned.


They toured the ruins, learned about the role the Spanish Inquisition had on the area and then settled in for a picnic lunch.  Lyn greatly enjoys little day trips like this because it allows them to be out doing something but still lets her get home before her discomfort sets as the day fades.  She doesn't admire the architecture or the massive red stone walls.  She doesn't particularly pay attention to the beautiful sky or the location.  She will pay close attention to any people they encounter along the way, including park rangers.



The first picture doesn't really convey just how massive those walls really are.  Here's Lyn on the path taking you through the ruined church itself.  Lyn reports that she had a very good day that day.

Monday, October 10, 2011

Creeping Paranoia

The Creeping Paranoia has moved into the house with Mom and Lyn.

One of the symptoms of dementia is paranoia.  Lyn is becoming more and more paranoid.  She watches Mom constantly.  She checks to see if Mom is not only in-sight, but wants to know what Mom is doing.  If Mom sits down at the computer, Lyn comes and either stands behind her or pulls up a chair to watch over her shoulder.  When Mom opens an email, Lyn wants to know what the email is about, who it is for and why the person wrote to Mom.  It does not matter if the email is personal or business related, if it has funny pictures, attached forms or is just a short note from me giving an update on my childrens' health.  If the phone rings, Lyn will come and stand so she can obviously listen in and know who is on the phone and what is being discussed.

As I mentioned yesterday, I believe the paranoia has been there for a while.  It was just more subtle and directed towards a couple of people at work with whom Lyn had conflict.  The paranoia is creeping and getting worse however.  This is, honestly, to be expected because of the damage being done to her brain.    The paranoia is a result of her short-term memory being damaged.  That doesn't make it any easier on Mom.  Mom has to respond to Lyn in the moment and the moment is often frustrating.

Mom's privacy and personal space are being eroded because Lyn is constantly seeking to reassure herself that things are OK.  So, how should she respond?

Contradicting Lyn is not going to help.  Lyn won't be able to reason through the situation.  Scolding is not going to help because Lyn won't be able to correct her feelings of suspicion and paranoia.  From the two links above, they suggest investigating the suspicion and attempting to distract the person from the topic of their current focus.  Mom and Lyn are already maintaining a consistent environment, set of care givers and routine which are some of the other suggestions.

It seems like there's not a lot Mom can do that she's not already doing.

Additional Information Sources:
The Tangled Neuron
Dealing with Dementia

Sunday, October 9, 2011

Pulling a DJ

On Thursday, Lyn had her weekly bowling session.  She had a really good time bowling, as usual.  She always enjoys herself when she's at the alley.  She thrives on the competition and the socialization even if her scores are all over the place as you can see.



Lyn's respite provider was out of town so Mom stayed at the alley and waited for Lyn to be done.  The care providers, usually other mothers, tend to sit and chat while they watch their athletes practice.  Another mother who has known Lyn since middle school approached Mom to inquire about why Lyn's no longer working.

Mom explained that Lyn has been diagnosed with dementia.  Prior to that, Lyn was struggling with work as her interpersonal relationships with her coworkers was becoming more and more of a problem.  Looking back on the various incidents, I believe we were witnessing the onset of the dementia and the subsequent changes in personality that it can bring about but we didn't have any idea that dementia was the cause of the problem.

Lyn struggled more and more to complete the tasks that were part of her job such as wiping down the tables, sweeping the floor or refilling the toilet paper rolls in the bathrooms of the Wendy's restaurant where she worked for 19 years.  Not only were the tasks being done to a less and less satisfactory level, but she would butt heads with particular coworkers and felt they were out to get her fired.  More than once, she'd come flying out of the restaurant at the end of her shift in tears saying that someone was mean to her.  Things escalated until she quit at the end of a particularly challenging day.  Lyn actively resisted her team's attempts to get her back into the workforce.  Those attempts ended with the dementia diagnosis.

After hearing Mom's explanation, the other mother said that Lyn needed to be kept busy because "probably the problem is she has gotten lazy."

Now, I have to stop here and interject a bit more about Lyn.  Lyn, despite all her failings and her challenges, cannot be described as lazy.  She never could be described that way.  She, even now, leads a more socially active life than I lead.  If there is a task at hand, she's quick to offer up assistance.  Need the groceries brought in from the car?  Ask her.  You may not even complete your sentence before she's moving.  Need to deliver a plate of cookies to the firemen?  She's your Girl Friday.  Need to have a turkey carcass cleaned after Thanksgiving dinner?  She won't leave a scrap of meat on it.  She's always wanted to help and basks in the positive words you give as a result.

Mom pointed out that being lazy isn't the problem.  Lyn has regressed and is no longer able to be trained much less (re)educated.  The other mother stated that since Lyn "is so high functioning she knows how to play the game and get what she wants."  We can all agree that's true in some situations.  However, the level of acting that would require, day in and day out, is not something Lyn can maintain.

What struck me about this conversation between two mothers is that this lady was taking the same approach as the neurologist.  Both had made up their mind.  In this case, the mother had made up her mind before even approach Mom.  She was looking to create an opportunity to say that she believes Lyn is lazy instead of listening and weighing the evidence placed before her.  We call this "Pulling a DJ" in my family.

DJ, may she rest in peace, was my step-grandmother.  DJ had perfected the skill of appearing to look at you but instead looked through you because she didn't feel you existed in the same world as she existed. She would appear to listen only to reveal later that, despite hearing every word you said and verbalizing responses that made you think your meaning was being conveyed, your words didn't matter in the slightest because you, ultimately, didn't matter.  Your issues were of no concern to her and so she didn't trouble herself with you.

When someone pulls a DJ, it is tremendously difficult to get them to focus, really focus, outside themselves long enough to begin to understand.  It can happen and I'm always an optimist hoping it will. Unfortunately, in the case of the neurologist and the other mother, it didn't happen.

Saturday, October 8, 2011

The Police

My sister has a long history with the police.  I'm not saying that she's been arrested or crossed the law in any way.  She hasn't and would give you The Look for even suggesting that she had.  Oh no.  She's had a long, positive history with the police.

Maybe it started when she became a Special Olympian and the local Sheriff's Explorer troop would provide event support by directing traffic, the flow of people or even handling some security.  We were introduced to the Explorer's through a family connection so that could also be it.  Either way...

I'm not sure when it began, but at some point, Lyn took it upon herself to say "Thank you" to every police office that crosses her path and makes eye contact with her.  If an officer makes eye contact, she'll start with a "Hi!"  If the officer returns the greeting, she'll then say something like "I just want to say thank you for all you do.  I really appreciate how you keep us safe.  You're doing a good job!"  It is interesting to see how the officers react.  Occasionally, they're confused and look a little trapped.  Most often, they are a bit bemused but warm up by the word "thank".  Sometimes, this results in a hug being given.

I had a running theory that Lyn was targeting just the male officers.  A call to Mom has corrected that misperception.  I've only seen her thank the male officers.  She's also thanked the female officers.  There's just fewer of them.  See, my theory focused on the fact that Lyn loves a man in uniform.

She might try to deny it but the denial is pretty weak when she's giggling and nodding her head "yes."

Friday, October 7, 2011

Brain Anatomy

Previously, I've provided a link to The Whole Brain Atlas as just an Additional Information Source.  Today, I want to call a bit more attention to it as a resource.

The Whole Brain Atlas is provided by Keith A. Johnson, M.D. and J. Alex Becker, Ph.D. at the Harvard Medical School.  The atlas provides many different images of the brain and various conditions which impact the brain.  The primer explains some terms and the second page provides some very clear examples of what a doctor looks for in the brain images they review.  Wonder what a brain bleed looks like?  Check out their example.  They even have 3-D models for you to peruse.

Another great resource for viewing brain anatomy is found at Wayne State University's Radiologic Anatomy Brain Module.  What I like about this site is that you can pick one of their three views of the brain and see a number of MRI scans for that specific view.  On each image, you'll find numbers which correspond to an anatomy explanation to the right of the image at which you're looking.

What I liked about both of these sites is that they took images which are pretty obscure to someone who is not a medical professional and explain what is in the image.  While these two sites are clearly designed for the medical student as a teaching tool, I found them very helpful for my own understanding.

If you need to understand brain anatomy a bit better, I'd start with either of these.

Thursday, October 6, 2011

Clipping Coupons

Lyn has helped Mom with her weekly coupon cutting for years.  This is something she started doing when we were kids.  The dotted lines surrounding most coupons or the straight lines that surround others were perfect for her to follow.  Mom would point out the ones she wanted and Lyn would cut them out.

Sunday's coupons were a little differently handled this past week.  Mom pointed out the five that she wanted.  Lyn got her scissors and got busy.  She then held up the pictures of the item and not the coupon.  She looked puzzled when Mom said "No, I need the coupon."  Mom had to show her what was wanted and then Lyn was able to complete the task.  Fortunately, she hadn't cut the small picture from the coupon, just the larger, advertising picture from the newspaper insert.

When I heard of this, it made me think of the recent visit with the neurologist who clearly wasn't listening.  Would he suggest that someone else needs to teach Lyn how to cut coupons?  Ridiculous.

On a related note, I had a check up with my endocrinologist.  I believe I've mentioned that thyroid issues run in the family and that Lyn's now on a very low dose of thyroid replacement hormone.  My endo is one of the best doctors I've ever worked with and she always asks about my family and my life outside of just my symptoms.  I let her know of Lyn's dementia and we discussed her for several minutes.  My doctor's assessment is "That doctor clearly isn't listening!  Disgusting!"  I had to laugh.

Wednesday, October 5, 2011

An Ignored Generation

When Mom was young, it was rare to know of families with intellectually disabled relatives.  She knew of one family and their relative was kept chained to a toilet.  Such events seem unthinkable today, but they still occur.  If the intellectually disabled were not locked away in the home, they were institutionalized.  In the mid-1960's, the intellectually disabled were widely released from the institutions where they had lived, some for their entire lives.  This movement really was in full swing by the 1970's and the released patients were returned to their families or ended up homeless.

Today, 40 plus years later, the intellectually are rarely institutionalized.  They are encouraged to live independently, in group homes or with their families.  Lyn lives at home with Mom.  While more care has been provided to the intellectually disabled and they are no longer subjected to a program of eugenics, there is still a long way for us to go in properly advocating for their needs and providing them with proper care.

There are pockets of physicians and other care providers who do have a focus on the needs and the differences of the intellectually disabled patient, there is still much to do.  More physicians can address the needs of the cancer patient or the elderly than they can the intellectually disabled.

In the hopes that Mom's experience with the neurologist was not the norm, she approached the mother of another bowler at the Area Games on Saturday.  The bowler is about 15 years older than Lyn and was diagnosed with Alzheimer's Disease three years ago.  She has Downs Syndrome and, of interest, her sibling is a physician at the University of New Mexico Hospital.

Mom asked the other mother which neurologist was treating her daughter.  The answer was that no neurologist was providing care.  In her experience, no neurologist in or around Albuquerque was worth the time because they did not have experience with the intellectually disabled.   Early on-set dementia is well documented for those with Downs Syndrome.  Even with that, even with the research that has been done for the past 10 years or so, there is a lack of knowledge and experience with the very people who should be able to serve as resources.  Because of this, the other mother said that Lyn and her friends are "an ignored generation."  They're no longer institutionalized but they're still marginalized.

This family has decided to focus on maintaining the quality of life for the daughter with Alzheimer's.  Her primary care physician is providing as much care and support as possible.  They are focusing on medications to stabilize her agitation but not introducing medication to try and slow down the progression of the disease.  They are still keeping her active.  For example, she still bowls and competes with the other athletes.

There is hope for the next generation though.  For example, the Kennedy Krieger Institute in Maryland focuses on the specialized needs of children and adolescents with intellectual disabilities, neurological disorder or other challenges.

Tuesday, October 4, 2011

The Importance of Play

During my daily reading of the news, I came across an article of interest.  It focuses on the importance of play and laughter for those individuals who have dementia.

Play-Up is a program started by humor therapist Jean-Paul Bell which encourages dementia patients to play  more.  Bell participated in a study of how humor therapy impacts "mood, agitation, behavior disturbances and social engagement in dementia patients."  The study showed a 20% reduction in their agitation, a reduction equivalent to putting them on antipsychotic medications, and led to the founding of Australia's Arts Health Institute.

Mr. Bell and his partner Dr. Peter Spitzer, both founders of the Humor Foundation, modified their humor therapy approach for sick children to fit the needs of the aging patients with dementia to positive effect.

Here in the US, the Big Apple Circus provides Clown Care where their professional clowns make therapeutic visits to partner hospitals each week.  Another thing that the Big Apple Circus does as part of their community outreach just came to my attention this week.  They frequently partner with organizations which serve disadvantaged children in the communities where they perform to offer up tickets.  The gift of these tickets allow the children and their families to attend the circus for free.  This came to my attention because the county where I live and am a licensed foster parent has apparently partnered with Big Apple for the children in foster care.  (Thank you Big Apple.  We had a wonderful time!)


Additional Information Sources:
Dementia Net article on Play-Up

Monday, October 3, 2011

Speaking of Bowling

Lyn is afraid of thunder.  She always has been.

When we were very young, we had a little black dog named Zeus.  You can see him here.



Zeus was a Peek-a-poo back in the days when designer dogs were really just pure breeds.  Zeus was a sweet little dog who loved to play with us.  He especially loved to play with balloons.  He would grab a balloon by the knot and shake his head for all he was worth.  The balloon would whap whap whap against his ears and he'd get so excited.  He would do the same thing with gloves.  This would send Lyn into peals of laughter.

Zeus was afraid of thunder too.  If there was a storm brewing, the first thunder clap would send him flying underneath Mom's bed.  A few seconds later, Lyn would come flying into Mom's arms.  It didn't matter the time of day or night, she'd be up and moving in a flash even if the rest of us slept through it.  Mom was a pretty light sleeper long before this because of the need to check on Lyn's breathing when she was little.  So, Mom would just lift the blankets and have them ready for Lyn to dive into.

Mom would then cuddle Lyn and try to talk her through the fear.  At some point, Mom described the sound of thunder as the sound that the angels make when they're bowling.  I can't even remember when that explanation came into play.  I just remember it always being part of our family's way of explaining things.  Even as kids, we had bowling toys or would set up our blocks and knock them down with balls. So, the concept of bowling was very familiar to Lyn well before she became a bowler.

Last week, the east canyon winds got very bad.  You could hear patio chair blow over, the flower pots by the front door blew over as well,  All this made Lyn nervous.  Despite the howl of the winds, Lyn eventually was able to fall asleep.  A short time after going to bed, maybe an hour, there were two claps of thunder.  Still, no rain.

She came stomping down the hall and was MAD.  Mom assured her it wouldn't last long and to just sit down with me and watch tv.  She did but was actually shaking.  After a few minutes with no more thunder, Mom suggested she go back to bed.  The Look was leveled in response.

After about 20 minutes Lyn said, "I think Grandpa was bowling with the angels and he made the 2 strikes."  Mom agreed and said he would probably be sorry he woke her up.  She told Lyn that their game was over.  So she got up and went back to bed.


Mom continues:  

"I got to thinking how she explains the sound of the thunder.  Trying to have the sound relate to something familiar was important to her.  I remember the first time your oldest child was here during monsoon.  When the thunder started one night, she, of course, said it was grandpa and angels bowling.  LOL.  "Someone" tried to explain the scientific reason for thunder but was cut short.  Poor child really thought grandma had lost it!!!!  Your child's look told me that all the holes in my head were showing.  

I realized how many times over the past 40 years, I have played games to help her get over things that frightened her.  Angels/grandpa bowling games; chocolate police - thoses were the best ones.
Yes, I'm going to Hell for lying."

Sunday, October 2, 2011

Competition

Today, you get two sets of scores!



Lyn had her normal Thursday bowling practice.  Then, yesterday, she had the Special Olympics Area Games bowling competition.  This competition determines if her scores are good enough to compete at the State level again this year.


The second game was a 152!  That was enough to win her a blue ribbon and put her in the State games.  Good job, Lyn!

The New Mexico State Special Olympics has gotten so big that they have divided the competition into two Regional games.  The Regionals, what I had been calling State, will be on October 29.  This is almost a month earlier than it has been historically.

This year's Area Games were held at the Santa Ana Star Casino.  It is a very nice facility which has hosted the Area Games previously.  It has 36 lanes and the facility really bends over backwards to accommodate the special needs of the athletes.  State games were usually held in Las Cruces.  If I understood Lyn correctly, then the newly divided Regionals will happen in Las Cruces and at Santa Ana Star Casino.  This will be much easier on Lyn since it won't be an over night, bus expedition.  Instead, she'll have a short drive to the casino and then be able to sleep in her own bed.


As a side note, the guy who paid for the two weeks of bowling in September has paid for the bowling for a week in October.  He also keeps asking to take all the athletes to the movies as well.  Lyn's respite provider has some pretty serious concerns about him.  His first gift was kind and generous.  His behavior towards Lyn since and his continued financial involvement is very odd.  If a trip to the movies occurs, Lyn won't go.  She doesn't like going to movie theaters anyway.  She finds them too loud.

Saturday, October 1, 2011

Watching the Bulls

Lyn has a deep love for watching the PBR.  She watches it on tv every chance she gets.  She even tries to attend one of the PBR events in Albuquerque each year.  She's not rooting for the bulls like I do.  She's rooting for the riders.  She likes their jeans and their chaps.  She particularly likes Ty Murray.

Sunday night, she was able to watch PBR.  She clapped, cheered and wrote down the cowboys' numbers and scores.  She has done this for over 10 years.  She knows Ty Murray and JW Hart.  They were riders on the circut.  Ty Murray sponsors the event in Albuquerque and has become the PBR president.  Both men are commentators and have been for several yrs.

During Sunday's PBR viewing, Lyn turned and asked who they were and if they are new to the circuit.  Mom said that both men have been involved with PBR for many years.  Lyn's response, "Oh, maybe they were on vacation."  Mom could only say "Could be."  She don't want to point out any new shortcomings.
Lyn had watched a rerun with them Sunday afternoon right after we had our weekly Skype conversation.  By chance they had caught it and she spoke both names in the afternoon.  By evening, it was a different story.