Friday, January 31, 2014

The Social Mask

Lyn's always been a very social person who doesn't like to disappoint.  She has her public persona and her private one.

When we were young, I called this her angel/devil complex because to me, at least, she seemed like two different people.  When she and I were together, should would deliberately work to irritate me, especially if I was working on homework.  She would be bossy and negative and work to instigate a fight.  The moment she heard Mom's car out front or another person was added to the mix, she was all smiles and helping hands.  We're seeing that behavior again.

At day hab, she's always smiling and accommodating to the staff and other clients.  When a new client is introduced, she's the unofficial welcome wagon.  She greets everyone and takes it upon herself to give the new clients a tour of the facility.  When suggestions for activities are made, she agrees to go along even when she doesn't want to go.  However, when she's in the car, she drops her social mask about half way home and starts venting to Mom.

Lyn works very hard to keep up appearances and knows that Mom's a safe person.  She's comfortable and in that home-level of one-on-one she drops the mask.  By the time she drops it, she's unfortunately very tired.  The fatigue and the diseased brain get things mixed up and blown out of proportion.  If someone doesn't hand her something in the exact way she expects them to, she believes they've rudely thrown it at her, for example.

While wearing the social mask is a well-honed skill with Lyn, it comes at a price which she is less and less able to tolerate.


Thursday, January 30, 2014

Remember When (Part 2)

The memory that Lyn sparked for me the other day just keeps giving.  So, we'll finish the tale of that weekend.

The dance was after the opening ceremonies on the first day of the weekend's competition.  At then end of the second day, our hosts at the Air Force base had arranged for the on-base movie theater to have a private showing of "The Land Before Time" animated movie for the athletes and anyone connected with Special Olympics.  The athletes had to sit with their teams but no one had to pay an admission fee to watch the film.  There was even popcorn and drinks available for all.

The athletes were seated relatively quickly and they were very excited to be there.  The coaches and chaperones were with the teams as well.  The volunteers filed in after we were all seated and yet more  people kept filing in.  I'm pretty sure a Fire Marshall would have had a fit because the theater ended up with Air Force personnel leaning against the walls watching the movie with us.

The athletes loved the movie, cheering when the little dines got away from the T Rex.  Some cried when Little Foot's mother was killed.  When the movie was over and the lights came up, I realized that the cryer behind me was not an athlete.  He was actually an officer in the Air Force and he was wrecked.  I looked around and noticed quite a few of the adults wiping their eyes and sniffing.

I asked the gentleman behind me if he was OK.  He looked startled but commented that it was so sad that the mother dino had died.  I was a bit aghast.  He looked closely at me and realized I was dry-eyed.

"Didn't it upset you to see her die?"  He asked.
"No.  Why should it?"
"Because she died!"  As though it should have been enough of a reason.
"And?"
"That doesn't upset you?" He was growing more incredulous.
"No.  The T Rex needed to eat."  My many hours watching Mutual of Omaha, Nature, Nova and National Geographic specials was peeking through.  "Look, " I tried to be conciliatory "I work at the Natural History Museum and feed live mice to the snakes.  Animals eating each other doesn't bother me."  His isle had opened up enough for him walk away, shaking his head.

The plan for the rest of the night was to return the athletes to their rooms so they could sleep before the final rounds of competition, closing ceremonies and departures.  They were dragging and so was I.  I had gotten very little sleep the night before and wasn't sure how I was going to make it through another night of keeping my sister's admirer out of her room.

I tried speaking with his coach and chaperones.  They knew he was an issue and were a bit intimidated by him.  He was over 18 and they felt limited in what they could do.  So, seeing things were not going to be resolved by them, I resolved to sleep on the floor in front of her door if necessary.  It was necessary as Lyn's admirer came calling not long after the other athletes had settled in.  I wouldn't let him near her door.

My admirer was still around.  He stayed to keep me company and when he saw me fading he made an offer.  "Look.  You're exhausted.  Go sleep.  I will keep watch.  I know how to do it.  You don't."  How could I refuse?  He was right.  He was pretty fresh out of basic training and had to pull watches sometimes.  So, I left him in the hall with a promise to wake me if he needed to sleep or leave.  About 5:30 in the morning, he knocked on my door.  He knew we'd have to wake the athletes soon and thought I'd want time to shower.  He had turned my sister's admirer away a couple more times after I had gone to bed.

Lyn never knew that her admirer had tried to gain access to her room for two nights.  She never knew that I had worried she'd get pregnant or get hurt or catch something.  She had competed, seen friends, met new people and had flirted with her admirer outrageously.  She had pretty quickly forgiven me for making a scene by the van.  The words "not being appropriate" were pretty powerful and evoked Mom.  She couldn't really argue with that.

When the closing ceremonies were over and we were home with Mom, I made my decision to never chaperone for Special Olympics again.  Even so, I would find myself worrying about her when she was away at competition, hoping the chaperones and coaches kept her safe.  A couple of times over the years, we would get reports of her being removed from situations which were getting inappropriate.




Wednesday, January 29, 2014

Lovely

Lyn got a trim and it looks lovely.


When I told her it looks good, she was humble and said "Thanks.  I know."

Tuesday, January 28, 2014

Remember When?

One of the things care providers of dementia patients here again and again is that we should not ask questions centered around provoking a memory.  So, starting a question off with "Remember when...?" or "Do you remember...?" is off the table.  Well, no one has told Lyn that as if she starts off a conversation with "Remember when...?", we stop and listen.

"Remember when you and I went to that dance and it was the biggest one?  Bigger than any other that we went to?" She asked me when we skyped this weekend.  I thought for a moment as she continued "They had lots of music and lights and it was the biggest dance we went to."

I've not been to nearly as many dances in my life as Lyn has and was able to quickly go through my mental list of dances I've attended, quickly sorting them into two columns.  Did I attend with my sister?  Yes or No.  Only two ended up the in Yes column.

In our joint senior year of high school, we both attended a school dance.  Was it a big dance?  No.  No dance is big when you're graduation class is 45 students.  So, that left the other dance.

When I was 15 and Lyn was 17 or 18, we had a Special Olympics weekend together.  I'm fuzzy on her age because the weekend was during the Winter games which would have been within a month of her birthday.  She competed in down hill skiing then.  I was invited to be a chaperone for her team.  Now, whoever thought a 15 year old girl would make a sound chaperone for her disabled sister and teammates must not have factored in the fact that the majority of volunteers were coming from the local Air Force base.  Let us not even go into the fact that the athletes were being housed in the barracks on base with more volunteers.

One of the well established traditions with the Special Olympics is that there is a dance connected with the weekend games.  These particular games were no different.  After opening ceremonies, we found ourselves at a venue on base where the Air Force had set up for a dance.  There was a DJ.  There were lights.  There were refreshments, coaches, volunteers, chaperones and athletes dancing all over the place.  It was big.  Lyn's right.  It was the biggest dance I think we've both ever attended.  I am not sure if the athletes outnumbered the coaches, volunteers and chaperones.  Let's just say the ratio was nearly 1:1.

Lyn had acquired an admirer from another team.  He was highly manipulative and predatory.  I had acquired an admirer from base.  Lyn's admirer was setting off so many red flags for me that I never really relaxed that night because he was trying to sneak her off to a quiet corner.  He had gotten her outside and was behind the van starting to kiss her when I confronted them (again).  The guy got very angry and tried to use his size to intimidate me.  I wouldn't back down and kept telling them to go back inside to the party.  When they finally did, I was mad enough to punch the van.  My admirer  pointed out that I had just punched government property.

So, Lyn's "Remember when...?" triggered this cascade of thoughts in the time it took her to get through about three sentences.  I just smiled at her and replied with "Yes!  I remember that dance.  It was a big one with lights."  Mom looked confused because she wasn't making the connections.  "I chaperoned once out on base during a winter games," I explained.

You know... I am not sure I ever told Mom about that dance and that guy who was getting fresh with Lyn.  So, Mom, if this story is new to you, just know that I kept that guy out of her room later that night too, at one point, sitting in the hall with a book for over an hour.  He's the reason why I decided being a chaperone was hard work and never did it again.  I didn't want the responsibility if anything had happened.


Monday, January 27, 2014

Helping Children Understand

When change happens to the family, it can be a very challenging time for the adults.  It can be just as confusing for the children in the family.  We sometimes overlook how the stresses that adults feel impact the children in our lives.  We also may not realize just how much they are observing, absorbing or struggling to understand.  

When my husband and I were working to finalize the adoption of our little one, our case worker and kiddo's therapist suggested a number of books to help normalize and explain adoption to our child.  Two years later, we still read the books when we see our child struggling with a topic.  I think the same approach would be helpful in explaining and normalizing the confusing family changes that accompany dementia joining the family.

While my children and I have had numerous conversations about the changes in Lyn's brain, it may help them to see that our situation is common enough that someone has written a book on the topic.  This approach will be more helpful to my little one though I think my eldest child will benefit as well.  

So, if this concept is of help in your own family, here are some books we can use.  

Grandpa Has Changed by Jennifer Moore-Mallinos
Got Dementia? by Heather Pritchard
The Shadows at Sundown by Michael Rock
Always My Grandpa by Linda Scacco
What's Happening to Grandpa by Maria Shriver
Visiting Poppi by Judy Spitzer
Still My Grandma by Veronique Van Den Abeele

Not all of these books are about a specific disease that causes dementia like Alzheimer's.  They address the generic concept of dementia and may prove useful if your family member is dealing with Lewy Body Dementia or another dementia causing disease. 

Another resource you might find useful is the Kids and Teens page at the Alzheimer's Association.  It has links to videos and other resources for the youth in your lives.

Looks like I need to do a little shopping.  And this, lovely readers, is why a dear friend who helped us move once declared he never wanted to help a literate friend move again.  That was said after about 60 boxes of books were loaded into the moving van.  For those who prefer electronic versions, several of the books are available in Kindle format.

Friday, January 24, 2014

Stay Sharp

Richard L. Sharp, the founder of CarMax, is getting more involved in the Alzheimer's fight.  He and his wife, Sherry, have been supporting research at Johns Hopkins.  In 2010, when in his early 60s, Mr. Sharp was diagnosed with early on-set Alzheimer's.  Mr. and Mrs. Sharp were motivated to create a foundation to further the cause.  His family eventually established the Stay Sharp Fund at the Community Foundation to support research.  This partnership allows the Community Foundation to administer the fund on their behalf as they work to raise $100,000,000.

It is still the early days for the Stay Sharp Fund.  Hopefully, their efforts will contribute greatly to the effort to find a cure or prevention for Alzheimer's.

Thursday, January 23, 2014

SAGE Test

Researchers at The Ohio State University have developed a self administered test to help you identify a cognitive decline earlier than you might expect.  The test consists of four sheets of thinking exercises.  Each sheet only takes about 10 to 15 minutes to complete.  You only need to complete one of the four as they are interchangeable.  The good part is that you can take it repeatedly to monitor your changes.


The researchers have been working on the test for over 5 years to make sure it is a valid tool to use.  The accuracy of the test is significant with 80% of those who have a cognitive impairment when taking this test being identified and 95% of those who do not getting normal scores.  When it was announced recently, it proved so popular the requests to download it from the university's website crashed their system.

Wednesday, January 22, 2014

Words are Slipping

The Montana geese story from yesterday is just one example of how Lyn is loosing her ability to use words.  It was very evident last week that she was struggling time after  time.

Mom wrote:

"She struggled this evening with trying to tell me that she needed something.  She kept saying "when I take something."  I didn't want to play 20 questions so I let her struggle.  She was getting ready to go get a bath after 1 hour of PBR.  She kept just saying words that didn't make sense until, finally, she said "what I take when I have headaches."  Tylenol?  She looked so disgusted."

A day later, I received the following note:

"She seems so confused this evening.  She was sitting here playing solitaire and said, "Monday is should get here."  What should?  "What Steph is sending for my bday."  I nearly fainted but said "no, she sent you a card and inside the card was a gift card to Olive Garden."  She had the most confused look!!! "Oh yeah," but I wasn't convienced she remembered.  Fortunately, her cards were still on display.  I handed her the one you guys signed and she just nodded.

She's now asleep and my heart is heavy."

On Sunday, when I had the Skype session going with them, Mom had to step away from the monitor for a few moments to pull a pan out of the oven.  Lyn popped over from her seat into Mom's, as though she was going to speak with me privately.  She just sat there and stared at the computer, saying nothing.  I asked her if she wanted to tell me anything?  What was she thinking?  What was she going to do today?  She never responded.  She just sat and stared.  There was no real recognition that I was talking to her.  When Mom walked back into the room, Lyn moved back to her seat and looked around to spot Nikka.

The days of confusion are increasing and the words are slipping from her faster than we can help her maintain.

Tuesday, January 21, 2014

What kind of Geese?

Mom and Lyn pass several fields around town which usually have flocks of geese or cranes in them.  Lyn knows the routes to their various destinations and when to look for the birds.  On the way to day hab, for example, she knows to look for the Canada geese as they pass by one of the local high schools.

Last week, they passed the field and Lyn started looking for the geese.  That morning, five were flying in as they were passing and she called out "Look up!"  Mom acknowledged that she saw them and asked Lyn if she knew what they were.  "They are geese."  Mom told Lyn she was right and asked if she knew what kind they were.

Without hesitation she said "Montana geese."
"Montana?"
"Yes.  That's where I saw them!"
Mom asked if they could be Canada geese.
"No!  Montana geese!"

End of discussion.

Monday, January 20, 2014

Showing Off

Lyn was excited to pick out the Google Doodle of the Nutcracker Suite shirt we sent her for Christmas to wear last week.  She wanted to show it off.


There was a time not so long ago that she would have smiled for the picture.  This expression doesn't show that she really was happy.  We'll just take the fact that she wanted to show off the shirt as our proof of that.  

Friday, January 17, 2014

I Disappointed Her

When I spoke to Lyn earlier this week to wish her a Happy Birthday, I was a day late.  I had called while they were out to dinner and then gotten distracted and failed to call back.  I called the next day, however.  

Mom answered but Lyn knew the call was for her having recognized my number on caller ID.  I chided her for not being home to accept my call the night before.  "We were out to dinner!"  She laughed.  "It is a school night!  You don't go out to dinner on a school night.  Besides, you knew I would call."  She likes it when I tease her like this.  It makes her feel likes she's getting away with something.

I assured her that I had not forgotten her birthday.  Her gift was mailed on Monday.  I apologized that it would arrive late and asked if it was OK for it to be there after her birthday was over.  She assured me it was OK because I had shipped a box to her and UPS would bring her the birthday box.  

"Now, wait a second."  I had to say several times to stop her train of thought about boxes and UPS.  "I didn't send a box to you by UPS.  What I sent you is smaller than a box.  It is coming in the regular mail and will fit in your mail box.  It is smaller."  I could hear her repeating nearly every word I said.  There was a pause and then a disappointed "Oh..."

She quickly ended our portion of the call, expressing her displeasure at what I said by passing me to Mom.  Mom told me that Lyn had brought up the thought several times in the day that I had to have sent a present.  With each telling it got a little bigger and a bit more special in its delivery.  Mom had tried to reset Lyn's expectations but she wasn't accepting what Mom had to say.

I sent Lyn a gift certificate to a restaurant she likes.  She'll get to go out and enjoy herself.  She'll be happy with the gift once she gets it.  Just as importantly, it is something she'll use and it won't be something that she'll set aside and forget about.  

She may be disappointed now, but she'll be happier when she opens her card.

Thursday, January 16, 2014

Smiles All Around

Dinner out was a success even though it was after dark by the time they were finished.  Lyn even cooperated for a picture.



Wednesday, January 15, 2014

Celebrating Her

Lyn had a good birthday, yesterday.

When she arrived at day hab, the staff were ready with a cake.  They started singing "Happy Birthday" to her as she walked in the door.  She was delighted!

After day hab, she came home and found cards and a couple of presents on the dining table waiting for her.  Again, she was happy and excited to find what was in the wrappings.


When I got off work and called to wish her a happy birthday, they were already gone to an early dinner.  They were going to El Pinto, a family favorite.  Lyn had decided that she'll celebrate there as well.

"I might even order a virgin."  This is what she says when she wants a strawberry daiquiri.  She doesn't imbibe and always wants her drink without the rum.  Mom has to quickly translate to the wait staff when Lyn leans forward and ends her order with "And I'd like a virgin!"  If the staff has waited on her before, they tend to remember her and don't need the translation.

Hers comes with whip cream.

Tuesday, January 14, 2014

She is 43

Lyn turns 43 today!


She was very proud of herself when she told me that she's lost enough weight to fit into some pants she's not worn in 3 years.  So, instead of sending her a real cake, we'll send her virtual cake and tons of love and well wishes.

May today be a good day.  May she be happy and know that she is loved.

Happy birthday, Lyn!!

Monday, January 13, 2014

More Beads

Lyn received a gift card to a craft supply store for Christmas and decided she had to spend it this weekend.  Mom took her and knew from the moment they walked in that Lyn would select one and only one item; a bucket of beads.

Lyn has hundreds of beads already.  She's not made a beaded item in quite some time.  It didn't matter because she "needed to get different colors" than she already had.  The gift card was sufficient to purchase the biggest bucket of beads in colors she didn't have that was available and she was happy.  Upon their arrival home, Lyn set up a tray, found her divided container and set to work sorting the beads.


She hates the fact that the beads come mixed like jellybeans in the bucket.  She really wishes they were pre-sorted like many jewelry making beads.  And so, she sat for hours, sorting the beads into individual colors while watching figure skating.  She would pick out a couple of beads of the same color using a toothpick before sliding them into the bin.  Fortunately, she had two containers to hold her beads.  She was happy and occupied for hours and it exhausted her.

She was sound asleep by 5:30.  She didn't care that PBR was to come on TV at 6pm.  She didn't care that she needed her hair washed.  She was struggling to stay awake by 5pm.

Now that the beads are her focus for the moment, she may make something with them again.

Friday, January 10, 2014

An Early Start

Lyn's oxygen condenser was making a noise it should not make.  It had started making it with enough frequency that it was making her mad.  Mom called to schedule a service appointment to resolve the issue.  There was an opening this week, but it would require an 8am drop off so the work could be completed in the same day.  This would make sure Lyn did not have to sleep a night without it.

In order for the condenser to be dropped off on time, Mom had to get Lyn up extra early.  The sun was not even hinted at in the sky.  Then again, the Sandia Mountains are to the East of the city and the sun has to crest the mountains before the city sees a full dawn.  It was dark and Lyn was angry about it.

Lyn voiced her anger before they left the house.  She voiced her angrer in the car on the way to drop off the condenser.  She voiced her anger after the condenser was dropped off.  When she was given an opportunity to go to day hab early, she again voiced her anger and added in a shot about it being too early to go there.  Mom gave her the option of going back home to bed.  Day hab looked like a better option to Lyn.

When Lyn's day was over, Mom went to pick her up.  Lyn was still looking for a fight despite having set aside her anger when Mom was out of sight.  Once she was in the car and on the way home, she started back up.  Mom had to get stern to get Lyn to simmer down.

When they got home, Lyn was done for the day.  She was bathed by 4 pm.  She ate dinner at 5 pm and was asleep by 6.  Yesterday morning, she woke just as pleasant as she can be.  A good night's sleep makes all the difference when your ability to regulate your emotional responses is compromised.

Thursday, January 9, 2014

Spotter

Lyn, Mom and their lovely neighbor took a winter drive to the Bosque over the weekend.  The rest of the country may have been getting ready for the polar vortex, but they were able to go looking for the wildlife at the reserve.


Lyn surprised Mom by spotting a mule deer which was laying down in some tall grass as they drove by.  They saw more hawks than they've ever spotted before.  They even spotted a pair of Golden Eagles eating some lunch.

About 10 minutes after the picture above was snapped, Lyn started shutting down.  She was done and they still had about 1/4 of the way to go to get to the exit.  Mom spotted the change in Lyn as she drew within herself.  They quickly departed and went for a bite of lunch.  By the time they were driving home, Lyn was nearly asleep in the car, exhausted.

Her stamina for even these little adventures is fading.  Even with that, they had a good day.

Wednesday, January 8, 2014

Mom Doesn't Get the Point

"Mom doesn't get the point!" Lyn told their lovely neighbor as they ate lunch together this past weekend.

Lyn was worked up and angry with Mom because Mom had taken a phone call and deliberately excluded Lyn from the conversation.  When the phone rang and Mom identified the caller, she took the phone into her bedroom and closed the door to speak without being listened to or interrupted.  This is a rare action on Mom's part and it greatly upset Lyn.

Lyn informed her conversation partner of Mom's transgression and proceeded to explain just how much taking a private call "upset Nikka.  She was so upset that she kept going to Mom's door and crying."  Mom pointed out that she never heard Nikka; just Lyn coming to the door several times.  Lyn was prepared for this though.  "I had to comfort Nikka, you know!"

Dementia does this to people.  They can become paranoid and angry if their caretakers step out of their sight for even a bathroom break.  Fortunately, despite how angry Lyn was about the event, she also made it a bit easier on Mom.  Mom was able to find the humor in not getting the point.

Tuesday, January 7, 2014

An End to an Era

Lyn has decided that she no longer wants to bowl competitively.  She is ceasing all Special Olympics activities after nearly 37 years.  She cannot deal with the noise, distraction and confusion that bowling on the league causes her any longer.

This is her decision and her idea.  She's been working her way up to this for some time.  She will continue to bowl once a week with her respite provider.  They will just go to a bowling aloe where the Special Olympians are not practicing.

I am glad to know that she'll keep the physical activity.  She needs it.

Her time in Special Olympics has defined a huge portion of her life.  It has allowed her to achieve, succeed and be proud of herself.  She's met so many friends through Special Olympics.  She's earned hundreds of ribbons and metals.  She's given the opening and closing invocations at the various games.  She's strutted her stuff and she's even been the first female pentathlete in New Mexico.

There's a part of me that's sad that she's stepping away from her competitive life.  However, I can honor her decision to do so.  If she's not happy bowling with the other athletes any longer, then why do it?  Why force it?  She'd just be miserable.

It has been a good, long run and her last competition earned her another gold.  We will always be proud of Lyn and her time in Special Olympics.


Monday, January 6, 2014

Found it!

In May 2012, I posted about a documentary by Louis Theroux called Extreme Love - Dementia.  I was finally able to watch the documentary.

Here you go.


 
Extreme Love: Dementia by ahayee

It gives an interesting view into the lives of several individuals with Alzheimer's and their care takers.   There are sweet moments and difficult moments.

It is worth the hour.

Thursday, January 2, 2014

Vitamin E Study

In the interest of maintaining some decorum around here, I opted to skip writing a blog post night before last instead of blogging with a few too many glasses of wine in me.  With the New Year, I figured we all were focused on other things as well.  So now that the festivities are done, let's jump into 2014 with a little research.

At the end of last month, a study was published in The Journal of the American Medical Association (JAMA) which indicates that vitamin E may be beneficial to slowing the effects of Alzheimer's in individual's with mild to moderate Alzheimer's over the course of two years.



Now, before you start popping vitamin E pills, keep in mind that the recommended daily dose is only about 22 IU.  The study used 2000 IU of the vitamin which is a dose that is about 89 times greater than recommended the recommended daily dose.  It even exceeds the higher tolerable dose.  Why is this significant?  The vitamin is fat-soluble and an overdose can lead to bleeding problems.

So, more work needs to be done, but this is very interesting.