Wednesday, November 30, 2011

What Could be Better?

On Saturday, Lyn went out with her respite provider after a few days without seeing her.  Lyn was happy to go because she knew they'd be hitting the casino after a couple games at the bowling alley.  Scores are included below.


Bowling followed by the slots at the casino followed by dinner out.  What could be a better day for Lyn?    It would be a day in which she wins at the casino.

Her haul?  27 cents!
Her reaction?  Excitement!

Tuesday, November 29, 2011

Well Wishes

Happy Birthday, Mom!

I have, once again, failed to get a card in the mail.  Seriously, how you put up with me, I'll never know.  However, I've called in the forces and given Lyn the task of making you a card.  She's also promised to be extra sweet to you today.

Lyn was nearly giddy that I called to speak to only her last night.  I reminded her that it is your birthday and a card from her would be a perfect gift.  She said she could do that.  I could hear her smiling into the phone.

Your email later in the evening, about 20 minutes later, made me laugh.  To share with our friends, here's Mom's side of the story:

Your sister is so funny.  She was all but dancing when she hung the phone up.  Said "it was for me.  She wanted to talk to me about tomorrow."  
"Oh, our trip?"  
"NO."  A few minutes later, Lyn announced she was going in her room to watch Wheel of Fortune.  She closed the door.  She just came out and wanted to know if I would write something down if she gave me some paper.  
"Of course, I'll always help if I can."  
She went to get some paper and said "I don't know how to spell Happy Birthday."  
I almost chuckled.  I said "Hand me the card I got today from your cousin because it is in there."  I showed her the words and off she went to her room assuring me she'll bring it right back.Hmmmmm, such a mystery.  Of course I'll go along with it all. 



Monday, November 28, 2011

Showering

One morning while visiting Mom and Lyn, I turned to Mom and said "I need to go jump in the shower.  Is that OK?"  Mom started to say "Sure" when Lyn commented quite loudly and with emphasis "We do NOT jump in the shower.  What I'm trying to say is that you'll fall and get hurt."

Both Mom and I had to keep from laughing.

Sunday, November 27, 2011

She's Good with Kids

Lyn has always been good with kids.

She's happy to play with them on their terms.  She will sit on the floor and play with blocks, cars, dolls or Mr. Potato Head.  It doesn't matter to her what they play.  She loves the interaction even when she shoots me The Look.


She's gentle with babies.  She's happy to hold and cuddle them.  If they move suddenly or cry, the parent better be ready to receive because she'll pass the baby off pronto!  It doesn't matter if she's holding a baby or playing with a child on the floor, when she's done, she's DONE.

When the children are young, they don't notice that she's different from the other adults.  They just know they've got a great playmate who's happy to be silly with them.  Last week, with my little one, she played Hide-and-Seek each day.  They played outside.  They played inside.  They ran around the house cackling like loons.  

As the children get older, they begin to notice the differences in their interests and their intellects.  They see the world stretching out before them and realize that her world is not as expansive as theirs.  Sometimes, a child struggles with their relationship with her at that point.  They may want to correct her mistakes but quickly realize that she cannot keep up with the knowledge they are gaining.  They find themselves in a position of having to accept Lyn on her terms.  


This transition in the relationship is a good thing.  While it may not be easy to transition from pure playmates to something else, Lyn provides an opportunity for people to expand their own understanding of love, intelligence, compassion and the value of each person.

The young man in the picture above is a cousin who has grown into a fine young man.  He is a Marine and has graciously given permission for the use of this photo.  Thank you.

Saturday, November 26, 2011

Emotionally Ragged

My final night in town with Mom and Lyn was a bit challenging.  We'd had a good day when we'd gone out for breakfast and ran a few errands.  In the evening, our cousins were coming for a visit to let our children play.

After the initial greetings, the children ran out to play in the yard until dinner was ready.  My cousin spoke with Mom and Lyn, primarily focusing on Mom.  My cousin's wife and I got into a conversation.  Lyn didn't jump into the conversation as she normally does.  However, she would get up and come try to share the chair with Mom.

As the two conversations progressed, Lyn started growing agitated.  She wasn't the sole focus of the attention and wasn't sure what to do about it.  At one point, we heard the kids and wondered "Was that a happy or hurt sound?"  Lyn started pounding for the door and belligerently declared "I'll go find out."  Mom called her back and I said "Why don't we let one of the parents check?"  Lyn insisted that she knew what to do.  When she asked the children what they wanted to drink, she was pushy and demanding.

Fortunately, our cousins are well aware of what is going on with Lyn and are genuinely kind and patient people.  Despite Lyn's behavior, we had an enjoyable visit.  As they loaded into their car to head home, Mom alerted me to "expect tears by 8."  It was 6:45.  By 7:30, Lyn was sobbing.

I tried to talk to Lyn to see if there was something I could do, if she wanted to talk or needed a hug.  She shook her head at me and went to her room.  When Mom talked to her, she cried and cuddled up to Mom.  It came out that Lyn was upset that we were leaving in the morning.  She didn't want us to go.

She really didn't talk to me the rest of the night.  When she went to bed, she didn't say "good night" and we didn't say "good bye."  That didn't surprise me.  For several years now, we've not said "good bye" when I have to return home.  If we do, she always ends in tears.  It just seems mean to do that to her.  So, we don't.  We don't even say "good bye" if she's the one returning home.

The next day, Mom reported that Lyn was emotionally ragged.  She struggled through her speech therapy appointment and was taciturn afterwards.  She ended up in tears again.  They talked and Lyn was still very upset that we had to leave.  She understood that I needed to get back home.  She seemed to be grieved by the departure and that's unusual for her.

The night before apparently took more out of her than we anticipated.

Friday, November 25, 2011

Thankful For

Yesterday morning, as Lyn and Mom were watching the Macy's Day Parade, Mom asked Lyn what she was thankful for.  Lyn responded with "Christmas!"  Mom suggested that there were other things to be thankful for such as living in New Mexico, their home and their family.  Lyn thought for a second and then stated "I only have one brain cell today.  You're going to have to wait for me to think."  Mom struggled not to laugh at her response.

As Mom cut their pieces of pie for dessert, she tried again.  "Is your one brain cell able to say what it is thankful for?"  She shook her head and said "for you."  Mom thanked her and asked if there was anything else.  "No, I'm good."

When you have only one working braincell for a day, then that answer is good enough.

Thursday, November 24, 2011

Thanksgiving

Mom and Lyn are having a very quiet Thanksgiving today.  They've done so for the last couple of years.  With our family so dispersed, it is difficult for travel to happen this time of year.  Given the changes Lyn is experiencing a quiet Thanksgiving is not necessarily a bad thing.

There were years when we would join our Aunt and Uncle for their Thanksgiving meal.  My Aunt used to own a restaurant with her family.  Even though the restaurant would be closed on Thanksgiving day, there were years in which it was packed with friends and family.  When they stopped hosting the dinner at the diner, they would still host it at their house.  There was always too much food and, in all honesty, too many people for Lyn.

Regardless of where the meal is held or who hosts, Lyn always offers to pick the turkey carcass.



She will sit for as long as it takes to get all the meat off the bones.  This gives us time to clean up the rest of the meal.  Picking the carcass has become Lyn's job.  If we were to have a turkey or even a roast chicken meal at my home, she'd do the same thing.  Her patience for the task is pretty interesting.  The bones come out looking like they've been run through the dishwasher.  They're that clean.

We don't know how many more turkey carcasses she'll be able to clean.  However, we'll take each one.  I wish I could be with them today.  I'm very glad I spent last week with them.

(This picture was taken in November 1990.  We lived in Montana at the time.  Note the snow on the ground.)

Wednesday, November 23, 2011

Washing Hair

While we were visiting Mom and Lyn, I observed how Mom is already having to participate in the routine attention to Lyn's personal hygiene.  Lyn wanted to wash her hair before going out to her social group's dinner Friday night.

Out came the towel and shampoo.  Lyn bent over the kitchen sink and had Mom wash her hair there.  I asked how long this has been going on and Mom said "Oh, a couple of months."  It was evident to me that they had just adjusted to another task change and hadn't paid too much attention to it.  To my "Why?", Mom explained that Lyn had stopped washing more than just her bangs.  Even if she was to wash her hair during her evening ablutions, she would only do the bangs.  If she was asked to go back into the bathroom to do it fully, she'd come back out with just her bangs wet.  The rest of her head would be completely dry.

Lyn used to have long hair.  Actually, she's had long hair off and on through her life.  When she was able to keep her hair clean and well tended herself, she would frequently grow it out.


When she was working, Lyn would ask Mom to wrap her hair up into a bun to keep it tucked up and neat in the restaurant.  At one point, Lyn's hair was long enough that she even donated 12 inches to Locks for Love.  When Lyn had her most recent cut, 11 inches were removed.

Mom and Lyn have agreed to keep Lyn's short from here on out because Lyn is no longer able to maintain it independently.

Tuesday, November 22, 2011

Evaluation Results

The evaluation results indicate that Lyn struggled to complete a number of the tests.  For example, she stated the day of the month incorrectly despite getting the month and year correct.  She did not know the county and was unable to complete consecutive serial seven subtractions or spell "world" backwards.  She was unable to read or write a sentence and was unable to draw intersection pentagons.  (In all honesty, she could not have done those things prior to the on-set of her dementia anyway.)

Lyn's Full Scal IQ is 46 which is below the 0.1 percentile of the population.  However, her verbal comprehension index IQ score is 61 (as was mentioned in a previous post) which is in the 0.5 percentile.  Her perceptual reasoning index core, working memory index core and processing speed index core are all 50 and all in or below the 0.1 percentile.  The difference between the verbal comprehension and perceptual reasoning scores suggest she has a better set of verbal than nonverbal abilities.

Test results show that she's got impaired attention and concentration processes.  Memory problems were noted as well.  However, her previous assessments do not contain any comprehensive memory testing.  The clinician noted that, as a result, she is unable to determine if her memory issues represent a decline or  a stable low level.  Poor performance was also noted with tasks of concept learning, set shifting and response inhibition.  Lyn has defective problem solving and her capacity to profit from experience is sub-par.  Her judgment is impaired and her capacity for abstraction, including using inductive and deductive reasoning, is also impaired.  The clinician notes this means she has significantly compromised executive functioning.  However, her personality and emotional function results indicate no emotional problems.

At this time, the clinician has returned a result that Lyn has severe developmental disability requiring 24/7 care.

So, what does this mean to us?  The findings are very interesting in themselves.  They are considered a benchmark against which Lyn can be evaluated and compared again between now and two years from now.  The findings are not a great surprise or revelatory to us though because we're pretty honest in our observations of Lyn and her skills.

Monday, November 21, 2011

Neuropsychological Evaluation Tests

The neuropsychological evaluation results are in.  They are extensive and very detailed.  We'll look at them over the course of a couple of posts.  Before we delve into the results, I thought I'd share the tests the clinician used to return the results we now have.


The tests administered were as follows:


In addition to those tests, the clinician had access to the clinical reports from an evaluation one in 2000 as well as reports dating back to 1978.

I'm disappointed that the clinician who performed this evaluation did not do the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities  or the Assessments for Adults with Developmental Disabilities (PDF Link).  The tests above are geared for the regular population; not the intellectually disabled.  One, the Connors' Continuous Performance Test, is normally used in the evaluation of children with ADHD.

Sunday, November 20, 2011

Snicklefritz means "I Love You"

When we arrived for this visit, Lyn quickly called my little one "Snicklefritz."  The child is a bit literal and has been focused on names recently.  A correction was quickly offered up to Aunt Lyn before "What's a snicklefritz?" was piped from the back seat.  In unison, Mom, Lyn and I all said "Snicklefritz means 'I love you!'"

There are several definitions for the word.  It is a nickname for a child who is mischievous or a chatterbox. It is the name of a mouse in the movie Stalag 17.  Most recently, it is apparently a type of marijuana referred to in the movie Pineapple Express.  In our family, it has been around for as long as I can remember as a term of affection for a child.

Over the past couple of days, Lyn has called my child "Snicklefritz" more than she has called the child's name.  Snicklefritz is making Lyn laugh hysterically.  They've been playing Hide-and-Seek.  They've been playing with balls and blocks and building toys.  They've been sharing hugs and general silliness.  My little one accepts Aunt Lyn's use of the term and is readily responding to it from her.  I love seeing them play together.

Saturday, November 19, 2011

Maintaining Her Routine


Lyn was very excited when my youngest and I arrived in Albuquerque on Thursday.  She and Mom were at the airport waiting for us.  Other than that minor deviation in her schedule, she had a normal day that included bowling.  Lyn struggles to remember her scores and brings home her bowling league record to share them with Mom. 



The difference between her best game and her worst game since we’ve started charting her scores is about 100 points.  What is interesting to me is that it looked like her early scores were all over this place and the scores in the last couple of weeks have been coming closer together.  If she was new to bowling, I’d say she was getting more consistent in her approach.  She’s not a new bowler.  Lyn was introduced to bowling when she was in grade school.  She’s been bowling as a primary activity for at least 20 years.  Without having 20 years worth of scores available, I think our data set is too small to be meaningful, if it even can be. 

As long as she can continue bowling, she will.  As we found with a fellow bowler, she may be able to continue bowling for quite some time yet.  


We anticipate more Special Olympics award ceremonies and more hamming it up as the center of attention as she is above with the Knights of Columbus.

Friday, November 18, 2011

Caregiver Support

Of the millions of people who provide care for their loved one with dementia, I suspect very few volunteer for the job.  Most find themselves in a position of having to step up to a task that suddenly needs attention.  This task, though normally considered to be an end of life issue, is not very different from what Mom faced when Lyn was born.

You see, when you're pregnant, you hope and dream that your child will be healthy and happy.  You believe that the demands of infancy will ease as the child grows into a more and more independent person. While this is true for the vast majority of us, it was not the case for Lyn or for others who are born with chronic physical or mental challenges.  When this happens, the parent is suddenly faced with a daunting task that needs attention.

Lyn was born premature and struggled through infancy.  Her developmental marks, such as walking, were all eventually met though all were on the late side of things.  There were skills that she didn't acquire for years, however.  For example, she didn't sleep through the night until she was 16 years old.  Parents brag about their babies sleeping through the night by the time they are 6 months old.  Imagine being disturbed every night for 26 years because your child is awake and checking in with you.

Now, at 40, Lyn's dementia is causing changes which are evocative of her early years.  Her shadowing of Mom is an example of this.  We've heard from Mom about how she's facing a loss of privacy.  Mom's facing a daunting task with providing the care for my sister.  While I can help, it is at a distance and that is not always sufficient.

As a result, Mom and other similar care providers may benefit from supporting each other or receiving support from local third parties.  Mom is fortunate that Lyn is part of a program which provides Lyn a respite provider and a speech therapist.  While these resources are greatly valued and tremendously important to Lyn, they are not targeted at supporting Mom.  

Resources which are available include, but are not limited to, the following:

Thursday, November 17, 2011

She's Excited

During our trips to see each other, we've visited every zoo, botanical garden and aquarium within an hour's drive of our various locations.  It doesn't matter if we've gone once or 20 times, they're on the agenda.  Usually.



Lyn knows we're en route to spend a couple of days with her.  With this trip, I'm just going out to give a bit of a hand.  There's no day trip or special outing on the agenda.  If I can run the vacuum, cook dinner or just serve as a distraction for Lyn, then that's what will be done.

She's been randomly calling out "I'm SO excited!"

Wednesday, November 16, 2011

An Odd Afternoon

As dementia progresses, the individual who has it finds they are more and more unsure of what they are supposed to do.  There may be moments of lucidity; but they are just moments in the ongoing decline.  In the last week, we've seen both from Lyn.

Last week, she recalled how to turn on the TV using the remote.  She would vocalize each step and talk herself through it.  If she didn't vocalize it, she didn't know how to do it.  This suddenly reacquired skill was short-lived and has already faded again.

Earlier this week, Lyn had a particularly odd afternoon.  She had her normal speech therapy session in the morning and then spent some time running errands with Mom.  One of the things they needed to do was fill up the car with gas which they did just before returning home for lunch.  As they pulled into the garage Lyn said "I thought we were going to get gas."  Mom reminded her that they had purchased the gas right after the grocery store.  She said she didn't think so and that Mom was confused.

So, they ate lunch and Lyn decided to play solitaire on her computer.  Her computer is in her room.  Mom was in the living room reading.  Lyn cannot see into the living room from her bedroom.  She went back and forth at least 10 times in about an hour.  Each time she would come stand by the couch where Mom was reading.  Mom would ask if she needed "me to do anything for you" or if she needed a nap.  The answer each time was the same,"No, nothing."  A couple of times, Mom didn't say anything but looked up and smiled at her.  By mid-afternoon, Lyn was ready for dinner and was disappointed that Mom wasn't going to cook until later.  Lyn was in bed asleep before 7:30.

Some research suggests that the variance between good and bad days is a result of either damage being done to the frontal lobes which control our executive functions or a result in problems that arise when the brain needs multiple areas to process the stimuli it is experiencing.  Years ago, a neurologist told Mom, after Lyn had an MRI, that her brain damage was primarily in her left frontal and temporal lobes.  If her dementia is a symptom of changes happening in her brain, it doesn't surprise me to learn that these areas, in particular, are involved.

Tuesday, November 15, 2011

Autopsy Guidelines Change

Earlier this year, the U.S. National Institute on Aging and the Alzheimer's Association proposed new guidelines for Alzheimer's related autopsies (link to draft guidelines PDF).  The goal is to provide more information to scientists who are working to develop tests to diagnose Alzheimer's at an earlier stage.

The best measure currently to determine if a person had Alzheimer's is to have a pathologist examine the brain as part of an autopsy.  The documented cognitive decline in the individual is an important aspect in the diagnosis.  However, it is not considered definitive.  As a result, scientists are looking for changes in proteins in blood, changes to the cerebrospinal fluid or other biological markers.

The autopsy looks for the plaques and neurofibrillary tangles that are typical of late-stage Alzheimer's.  The interesting thing about autopsies is that some autopsies find these traits on individuals who were not suspected of having Alzheimer's.  They did not have the memory loss or other dementia symptoms.  This raises the question about how this is possible and is one of the biggest questions in Alzheimer's research today because it may open insight into treatment options.

Additional Information Sources:
Baltimore Longitudinal Study on Aging
Asymptomatic Alzheimer's disease: a prodrome or a state of resilience?
Alzheimer's Disease can be Asymptomatic at the Start

Monday, November 14, 2011

A Day Trip for a Play

Mom and Lyn took a day trip to Socorro to attend a showing of "A Lighter Side of Chekhov" at the Socorro Community Theater.  My cousin and his family are closely involved with the theater and had invited them to attend the early show on Sunday.  Here's Mom's account of the day.

**************************

Since the show was at 1:30, I knew we could go and be home before dark.  I said we'd go as long as the weather was dry.  By noon the wind was all but howling and the clouds blanketed the sky but off we headed, south on I-25.

The clouds were low, dark and very angry looking.  As I passed Isleta Pueblo, I thought "this sky is going to open any minute and we'll have a epic downpour."  Oh wait!  This is New Mexico and that won't happen.  So we put in a CD and watched the standing trains near Belen.  I had to turn my wipers on outside Belen, passing La Joya and then again crossing the Rio Puerco.  Even though they were on maybe one minute each time, it was enough to wash the bug guts off the windshield.  As we neared San Acacia, Lyn said she knew where the Texas Longhorns were.  Actually, I was surprised she remembered the cattle breed's name.  She pointed to them as we flew by.  She said she saw lots of calves, which she did.    

Pulling into Socorro, she asked if I knew where the Opera House was.  Naturally, I lied and said "Yes."  I did remember it is just past the grocery store.  Fortunately there is now a sign "Garcia Opera House"  So I turned into the lot.

This Opera House is well over 100 yrs old, built of adobe and I wouldn't be surprised if it wasn't haunted.  There were several people there when we arrived but it gave us a chance to chat with my nephew who directed the play.  When the play began there must have been about 50 people there.  During the fourth act, Lyn was getting antsy, looking around and leaning against me.  I thought maybe we would have to leave early.  The place was dark except for some lights on the stage.  Fortunately, a 15 minute intermission came and she relaxed.  Of course, knowing she could go eat some of the cookies helped.

Act 5 began and I knew she would be ok for this final one.  I know she didn't understand it but she laughed when the rest of us did.  She was relaxed and happy.  When it ended we went to the back to congratulate my nephew.  He told Lyn to take some cookies home.  She looked at me for the ok and I said she could bring four.  Her face fell but that's all she took.  She then gave me two and ate her two.  I'm waiting for her to ask me if I want mine.  LOL

Since it was 4pm and we had an hour drive, we quickly left.  We could smell rain.  Now, I realize how spoiled we are with only 360 days of sunshine and I was bummed about today being without the sun.  As we left town, cars had headlights on and it bothered her.  I reminded her that this time of day it's safer to turn them on since it gets dark quickly.  Cruise control was set and we headed North.  When we were coming by San Acacia, Lyn spotted four deer in the field where the Long Horns should have been.  Soon thereafter, she spotted a hugh hawk on the telephone pole.  She has good eyes and has always been a good spotter.

 By the time we approached Belen, I could see clouds were breaking up far to the west and the sun was peeking thru.  Coming around a bend in Belen, I spotted a bit of rainbow.  Within five minutes, it was brighter but went in a straight line.  No, I'm not kidding.  It was bright and perfectly straight up into the sky.   We were close to Los Lunas and the sun had cut clouds, shadows on the hills of basalt are so beautiful, to me.  She said, "we will be home soon right?"  "Yes, within 30 minutes."  It was getting dark and she's getting nervous.  Too bad the Dr. & PhD couldn't see this reaction.  Anyway, we watched that rainbow until we turned off I-25 at Isleta.  The clouds were golden & streaks of sunshine hit the Sandia Mountains where they weren't hidden by clouds.  New Mexcio has the most beautiful sky at sunset.

We were home shortly after 5pm.  It's now 6:30 and she's had a bath and is watching Cops.  Life is good,  She had a good day and said she was happy we went.  Me too.

Sunday, November 13, 2011

It is An Oh Well

In my reading about dementia, one of the suggestions to spark memories and conversations with a person who has dementia is to use phrases or sayings from their childhood.  The phrase is immediately familiar to them and may encourage them to engage with you more.  For us, one of those sayings would be "It is 'an oh well'."

Lyn would declare something was "an oh well" if it was mildly disappointing but nothing to really worry about.  If you accidentally spill something ... if you misplace something that is not critical ... if you forget something at home but don't have to go back for it, it is "an oh well."

I remember we were pretty young when Lyn came up with that phrase.  I believe Mom had said "Oh well" with a shrug of her shoulders over a series of small events.  Then, Lyn spilled her drink and asked Mom if it was "an oh well."  Mom was a little confused about the phrased being clearly used in place of a noun.  Lyn said "You know!  Oh well."  She mimed Mom's shrug.  Mom understood and the phrase came into our family's common use.

It has now been passed on to the newest generation of the family.

Saturday, November 12, 2011

She Loves Attention

Lyn loves being the center of attention.  She basks in it.  You'll see that as more stories and pictures about Lyn are posted if you've not noticed it already.  I'm not revealing any great secret about Lyn here.

Lyn is so outgoing and social.  She's not afraid of speaking to someone, posing for a cheesy photo or trying to make a new friend.  She's not self-conscious or afraid that she'll look foolish at all.  She's chatty, likes to mingle and wants to engage with people.  I admire that in her and think it must be a pretty free way to approach social situations.

As a result, we have pictures of Lyn with individuals she's encountered over the years who we cannot put names to the faces.  It really doesn't matter because we rely upon the context of the photo to tell the story for us.  Take this photo for example:


Lyn has her arm firmly around one of the mascots who came to a New Mexico State Special Olympics bowling competition to cheer on the athletes and give our hugs.  I suspect this picture was taken in Las Cruces a couple of years ago.  I couldn't even tell you what team the mascot represented.  In all honesty, this is the first time I've seen the picture.  Lyn sent it to me because she wants me to include it here along with her bowling scores.



What this picture tells me is that Lyn took some time from her competition to speak with and hug the athlete.  I am sure she was delighted to pose for the picture.  She was having fun.

This is Lyn in her element.

Friday, November 11, 2011

Tying Shoes

I don't know if everyone remembers when they finally understood how to tie their shoes.  I remember struggling to learn how to tie shoes.  I did't understand how tie a shoe when you start with only one loop, wrap the opposing lace around it and come up with a second loop.  Some refer to this as the "Rabbit (or Squirrel) around the Tree" method.  I still don't get that one.  I learned how to tie my shoes using the "Bunny Ears" method which I learned from a little purple duck on Sesame Street.  When it clicked, it was quite the revelation for me.

For Lyn, she learned how to tie shoes a little differently as well.  We'll let Mom explain:

"She was in third grade at McArthur Elementary.  I kept hearing her talk about "Nana" and had no idea who or what "nana" meant.  A couple of weeks into the school year, she wanted to show me something.  She promptly untied her shoes and retied them.  First, you make a loop with each end then loop the around one another.  They were tied.  I'd never seen it done that way but so what, the shoes were tied.

A few weeks later I was at the school for something, PTA perhaps.  I asked about her tying her shoes and the teacher informed me "Nana taught her."  Imagine my surprise.  He went on to say the school had a Foster Grandparent Program since there are so many low-income elderly in that area.  The grandparents come to the school mid-morning until mid-afternoon.  They matched them with a student for some special one on one time.  They were in the classroom and lunch room with their student for about four hours each day.

It turns out that Nana was an 80 year old woman who spoke no English, only Spanish.  She and Lyn bonded right off the bat.  One day, a shoe was untied and Nana realized Lyn couldn't tie it.  LOL, within one week hearing instructions in Spanish Lyn learned this task.  The teacher assumed Jenn knew "some" Spanish and was surprised when he learned she didn't.

Nana knit a little purse that she gave Lyn for Christmas.  I can see it now--pink, green, yellow & UGLY.  Lyn loved it for about 3 weeks then it disappeared.  No, I didn't get rid of it."

Thursday, November 10, 2011

Providing Support Long Distance

There are about 2,000 miles between my home and Mom's home.  I came out here for college and just kind of found myself here due to jobs and marriage.  Being so far away offers up some challenges for providing support to Mom and Lyn.  However, despite the distance, there are things I can do for them.

Mom reads this blog each day.  This has proven a great way for me to easily get information to her without inundating her In-box with email after email.  It also allows me to wade through my findings, summarize them and group them when several present themselves as related to the same topic.

Mom and I speak multiple times each week.  She's the one who is in direct daily contact with Lyn.  I can listen and ponder what she's saying.  This gives her someone to speak to, adult-to-adult, and lets me offer up a different perspective.  I can suggest topics for discussion with the various care providers they encounter, as well.

When I am able to visit, I can help by handling tasks for Mom to give her a bit more of a break.  I may lighten her load by handling the meals while I'm there or running an errand for her with my sister at my side.

There are other items that long-distance care providers have to consider.  These are part of the long-term conversation with Mom and Lyn even now.  For example, will Lyn eventually need to live in a specialized nursing home?  If so, how can I help?  Would Lyn and Mom ever come to live with my family?  Would I need to quit work to help provide care for Lyn?  Can I help gain access to services for Lyn from my remote location?  Do I have the time and energy to research the options available to them?

I'm fortunate that I know most of the answers to the questions above.  For the ones I cannot currently answer, I have the time to dig into them to find the right answer.  I'm also extremely fortunate that Mom and I have paired up for this journey.  I know that Lyn is well cared for and lacks noting.


Additional Information Sources:
AARP - Obstacles to Long-Distance Caregiving
Alzheimer's Association - Long-Distance Caregiving
Family Caregiver Alliance - Long-Distance Caregiving
Family Caregiver Alliance - Handbook for Long-Distance Caregivers
So Far Away: Twenty Questions and Answers About Long-Distance Caregiving

Wednesday, November 9, 2011

Learning to Ride

Grandma was the person to successfully teach Lyn to ride a bike.

She had an old blue bike with a big cushy seat.  There were no training wheels and Lyn was probably much too big to use them anyway.  Grandma figured that she could just hold onto the back fender of the bicycle to steady it while Lyn learned to ride.

They decided that the road out front of Grandma's house was too rough and covered in loose gravel to make a good learning surface.  So, that meant that they would use the well-worn from from Grandpa's workshop down to the well at the back of the property.  It wasn't a long distance, but it was smooth.  The entire property was only 1/2 and acre in area and the distance between the points is less than 1/2 the length of the overall property.  The well is the white square in the upper right corner of the picture below.


Off they went.  Lyn pedaled.  Grandma followed close behind, keeping a good grip on that fender.  They went to the well and turned around to come back.  They went to the well a second time and returned.  That was it!  Lyn got it.  She was able to ride independently from that point on.

It wasn't that no one had ever tried to teach Lyn to ride a bicycle before.  They had tried many times before.  I think it was just that previous attempts didn't quite click for her.  We've seen this numerous times over the years.  You can work and work and work with her on a task with no progress being made.  Then, one day, someone else tries something and the light goes on and the task is now done with ease.  The same thing happened when she learned to tie her shoes.

That's a story for another day.

Tuesday, November 8, 2011

Shadowing

Mom's expression of frustration in the Feeling the Stress post describes the dementia symptom called Shadowing.

Shadowing is when the individual with dementia follows their primary care giver around like a small or child follows their parent.  They may mimic the care giver or talk to them.  They may ask them extensive questions or get upset if the care giver tries to be alone.  Angela Lunde, Mayo clinic health education outreach coordinator, suggests that this behavior is a result of fear and insecurity.  The individual with dementia has difficulty determining where they are and what they are supposed to be doing.  A challenging part of the shadowing behavior is that the individual may not be able to express their anxiety verbally.  They may not even be able to break it down enough to be able to ask "What am I supposed to do now?"  As a result, they may be seeking those answers from the care giver because the care giver is a consistent part of daily life.

Suggestions for dealing with this stage, which too shall pass, includes such techniques as keeping the individual busy, giving them a bowl of low-fat cereal to nibble on or giving them lots of verbal reassurances that they are safe and you are there.  Some specific suggestions from the links above include:


  • If you need to step away for a few minutes, give the individual a timer saying that you will be back when the timer buzzes.  
  • If the individual with dementia says they want to go home, even if they are home, drive them around the block and return home.
  • If you are interrupted in the bathroom, add child-proof knobs to the bathroom.
  • Observe to see if the shadowing increases at a particular time of day.  If it does, get the person involved in a repetitious activity prior to the time as a way to distract them.


Additional Information Sources:
Alzheimer's Me and My Shadowing
Fisher Center for Alzheimer's Research Foundation: Shadowing

Monday, November 7, 2011

The Oath

In 1998, Lyn was asked to state the Special Olympics Athlete Oath at the start of the bowling competition.  She was so excited that she was asked.  She practiced the oath several times.


On the day of the event, she waited behind the counter at the bowling alley until she was to state the oath.  She was nervous and became momentarily shy.  When the time came, she froze up a bit and needed a bit of help to get through her role.



She got through it though and had a good day bowling.

"Let me win.  But if I cannot win, let me be brave in the attempt."

According to the Special Olympics organization's history, the athlete's oath was prepared in time for the first World games which were held in the Summer of 1968.  It has been part of the opening ceremony of Special Olympics events ever since.  While it takes only a few seconds to state, it has touched countless lives over the decades since it was first invoked.

Lyn did not invoke the oat at last week's competition.  That honor was passed to another.  However, she continues to practice her game in preparation for the next competition.  She had a pretty good game this week as you can see below.


She had a high score of 136.

Sunday, November 6, 2011

Our Brains Just Say Different Things

After Mom taught us about differences in appearances, she eventually had to reinforce for Lyn the idea that two things could look different but still do the same task.  Lyn was aware that she was different than the rest of the family and she was concerned about it.

Mom directed Lyn to bring her the hand mirror.  She asked Lyn to tell her the color of our eyes.  Lyn pointed out that we have brown eyes.  Mom had Lyn look in the mirror to see the color of her own eyes which are blue.  Mom then asked "What do your eyes do?"  Lyn thought about it and responded "They let me see."

Mom asked about our hair color.  It is also brown.  She again had Lyn study herself in the mirror before asking about Lyn's hair color which was blonde at the time.  Mom pointed out that hair is the same even if it is just different colors.

She asked Lyn what her brain told her to do.  Lyn declared that her brain tells her to "run fast and win a medal."  When asked what my brain told me to do, Lyn figured that my brain told me to "sit still and read a book."  Our eyes are different colors but they allow us to see.  Our hair is different colors, but it covers our heads.  She was able to convince Lyn that it is essentially the same with our brains.  Our brains are different but the same.  Our brain tells us what to do and how to do it.  Mom celebrated those differences.

Lyn grasped this concept as well and felt sorry that my brain was always telling me to read a book.


Saturday, November 5, 2011

Telling the Date

My Grandmother was a teacher.  She was the third of ten children and the oldest girl.  She graduated from high school, took a couple of college courses over the summer and started her teaching career that fall.  She had two of her younger siblings as her own students and taught three generations of children before she retired.  When I say three generations, I mean it literally.  She took class attendance the first day of the school year and recognized a new student's last name.  Upon speaking with the student, she discovered she had taught the child's parents and grandparents.  She left the room to let the principal know she was retiring on the last day of that school year.

Grandma was always looking for ways to teach Lyn something new and succeeded in unexpected ways sometimes.  For example, Grandma taught Lyn how to determine what is a day's date.

When Lyn would take the morning paper to Grandma, they would work on learning the date by looking at the front page of the newspaper.  Each day, they reviewed the date.  November 1, November 2, etc.  For some reason, Lyn would never say "first".  There was no January first or February first, for example.



Mom was reminded of this earlier this week when Lyn brought in the newspaper, took off the rubber band and announced "Today is November Oneth!"  Mom had to chuckle and confirmed that "Yes, it is November first."   Mom remembered that Grandma never corrected Lyn because at least she had it right in her mind.   More proof of Grandma patience.

Friday, November 4, 2011

A Simple Gift



'Tis the gift to be simple, 'tis the gift to be free
'Tis the gift to come down where we ought to be,
And when we find ourselves in the place just right,
'Twill be in the valley of love and delight.

When true simplicity is gain'd,
To bow and to bend we shan't be asham'd,
To turn, turn will be our delight,
Till by turning, turning we come 'round right.


"Simple Gifts"
Composed by Shaker Elder Joseph Brackett in 1848

Thursday, November 3, 2011

Apples

Susan Berg, author of Adorable Photographs of Our Baby, Meaningful Mind Stimulating Activities and More for the Memory Challenged, Their Loved Ones and Involved Professionals, suggests that the Fall theme can be used to spark conversations which stimulate the minds of individuals with dementia.  One of her Fall themed items is to encourage your loved one to list all the types of apples they know.


This suggestion reminded me of one of the creative ways Mom tried to teach us something.  She used apples to illustrate a particular point in such a way that we got it even as little kids.  Here's what happened:

When I was about five years old, Mom took us to dinner at a local restaurant.  Sitting at another table was a family comprised of an African American man, a Caucasian woman and their two children.  I remember asking if the children were zebras since their dad was black and their mom was white.  Mom shushed me and said we'd discuss it later.

That weekend we went to our grandparents' house where they had several apple trees.  This event had to have happened around this time of year because there were apples for the picking.  Mom picked a couple and sat us around the dinner table.  We talked about the apples.  We compared their sizes, their shapes and their colors.

Mom told us to stay at the table while she went into the kitchen with the apples.  A few minutes later, she came back and gave us apple slices to snack on.  She asked us if we knew which slices came from the green apple or the red.  She asked if we could identify the tall apple or the short.  We couldn't.

Mom then explained that people, like the couple in the restaurant, are like the apples.  We may all look a bit different, but we're really the same inside.

This stuck.  This discussion came up repeatedly when we were growing up.  It was a concept that Lyn really understood too.  Not only could we look different; we could think different.  She could be the athlete and I could be the academic.  The apples helped her understand that differences are normal and to enjoyed.

Wednesday, November 2, 2011

Hearing the Argument

What you cannot see in the picture of Lyn that I included in Monday's post is that Lyn was in an argumentative mood when we spoke earlier this week.  She was mad at Mom, holding a grudge and being vocal about it.  The funny thing was that she would step away and go off camera before making her argumentative comments.

Mom had gone into Lyn's room and noticed that two drawers of her dresser were not closing.  They were not closing because they were stuck open from clothes that had just been stuffed in and not laid in neatly.  Mom opened the drawers to sort them out and found that the drawers contained not just the short-sleeved summer shirts that Lyn's been wearing recently.  They also contained her extensive collection of long-sleeve tee-shirts and turtlenecks.  Lyn's been looking for the winter shirts for a couple of weeks now.  She's been asking Mom for them and complaining that she's cold.  Lyn's always cold.

Upon finding the shirts, Mom pulled them all out and put them in for the laundry.  They have been crammed in the drawers through all the winter months and could benefit from a freshening.  This is what made Lyn mad.

Mom mentioned the find and the resulting load of laundry to me.  Lyn got up, walked off camera and said "Not next time."  Mom closed her eyes a minute and upon opening them said "Nine.  Ten."  Staying off camera, Lyn continued loud enough for me to hear, "I can open my own drawers."  Mom didn't engage with Lyn and we continued on with the conversation.  Several times, however, Lyn would get up, go off camera and complain about Mom washing her winter shirts or opening her drawers.

At one point, Lyn settled down again within range of the camera and jumped into the conversation by deciding to tell Mom what she needed to do.  Mom responded with a "Watch your tone!" to which Lyn backpedalled a little.  She was in a mood though and kept coming back to expressing how she felt Mom had transgressed against her.

There's no winning when dementia is in the argument.  There's no rational explanation that you can offer the person to help them see that an action was necessary or was not what they believe.  The caregiver, in this case Mom, is the one who has to take all the actions to try maintaining positive interactions.

Tuesday, November 1, 2011

Feeling the Stress

I'm sharing this with you today because I want you to look into a window of what a caretaker sometimes feels.

Mom writes:

(Monday) was an "off" day. I had to wake her because she had speech at 8:45 and I figured 10 hrs sleep was enough. Things just seemed a bit more difficult today. BUT, I think what is going to be hardest for me on this journey is the paranoia or whatever you want to call it.

I noticed last night as I was fixing dinner, chicken chowder, she kept turning around and looking at what I was doing. She had been watching PBR. When I asked her to set up the trays she acted like she didn't hear me. I raised my voice a bit and she 'heard' me and set things up. She wanted to know if I was using drumsticks since that's the kind of chicken she likes. I said no but I have some in the freezer if she wants that for dinner Mon. Yes, of course she did.

Each time I have come to the computer today she has appeared at my shoulder. The phone range once and she answered it. Handed it to me and stood two feet from me. I got up and went in my room to talk. She then went to the island in the kitchen, even tho I'd turned on Price is Right for her to watch. She decided she needed to clean her stamps which she's not used in many months. But that way she could stand, spray them with 409 and still see and hear me talking on the phone. I know she was about to pop wanting to know who I was talking to but I ignored her.

I planned on putting the drumsticks on the grill. She announced she "loves fried chicken" for supper. WHAT????? So I'm frying them. I can't remember the last time I did that. Each time I go to the stove to turn them or check on them she's about two feet from me. Reminds me of the first 8 yrs of her life when she shadowed me. Makes me want to scream. Right now she pacing back and forth from the living room to the kitchen and looking over here to the computer. She even asked if I was sending you an email. I told her not to worry about what I was doing.

I guess her hovering bothers me so much is because all my life I felt someone had to know my every move and word. I've never really felt like I had privacy, even when I do. Maybe it's just that my life has never been my own. Actually, I'm probably way out in left field, tired and bitchy today. Oh well.