Tuesday, April 29, 2014

Keeping Engaged and Active

One of the challenges of caring for an individual with dementia is keeping them engaged and active.    This is a challenge because their skill levels and interest in their environment are fading.  However, it is important to try keeping them engaged because a lack of mental stimulation will lead to a faster decline.

Below, you will find a few videos with ideas on how to use inexpensive objects again and again as activities.  The first two are with Alzheimer's educator Teepa Snow.  We've linked to some of her videos in the past.  Please note in the first video that she refers to gem stones as a way to indicate at what stage of decline a patient is at.

Monday, April 28, 2014

Good While it Lasted

The Month of April 2014 is being noted as an exceptionally good month in the progression of my sister's disease.  It started with the surprise trip to Disneyland that opened her back up to excitement and wonder.  Those three days resulted in nearly a full month of happiness in Lyn.

The Disney effect, if we can call it that, energized her and helped her feel connected for a while.  We didn't see much in the way of tears, contrary attitude or confusion.  We noticed about a week out from the trip that she couldn't remember any of the names of the characters she hugged unless she had a picture of them in front of her.  She stopped telling people "I hugged Minnie but she had to go bake" when asked which characters she met.  Instead, she would say "I met lots of them!"

The Disney effect started to fade this weekend and the confusion and tears are back in full force.  On Sunday, Lyn started and ended the day in the bath tub.  When she watched the bull riders on PBR, she only wrote down their bib numbers.  This is the first time she didn't write their scores.  She decided "It wasn't necessary."

By 4:20 in the afternoon, she was pacing for the first time in a month.  She didn't know what she wanted.  Every suggestion was met with a "No."  After several suggestions, Lyn told Mom she could go ahead and cook dinner.  Mom agreed and walked into the kitchen.  On her way, she looked back at Lyn who had crumpled to the couch and was crying.  She didn't know why and couldn't answer.

We knew the Disney effect would fade and the confusion return.  However, we're thankful for the past month and the impact it had on refreshing both Mom and Lyn.  It was good while it lasted.

Friday, April 25, 2014

A Pirate's Life For Me

Let's end the week with a smile.

Lyn loved riding the pirate ship at Disneyland.  She liked it much more than riding on the Mark Twain paddle boat.

Thursday, April 24, 2014

Educating New Doctors: A Buddy System

Northwestern University has come up with an innovative way to educate future doctors about Alzheimer's.  By pairing the students with an Alzheimer's patient, the patient gives the student direct, hands-on experience with the disease.  The approach is called The Buddy Program.

I love this approach!  It is simple and meaningful.  It allows the patients to contribute in a way which may benefit others in the future.  It allows the medical students to put a face and personal experiences to Alzheimer's and other related dementias.  It is one thing to read about the symptoms of the disease.  It is another thing entirely to have someone sitting next to you living those symptoms.

Wednesday, April 23, 2014

Pooh Bear

While we were at Disneyland the first day, we stopped to get a cold drink.  My receipt had a coupon on it that was valid during the morning hours at several of the shops.  It was afternoon and the coupon couldn't be used until the next day.  Fortunately, it was just the first day of Mom and Lyn's time there. Knowing it might be of use to them, I handed them the coupon.

Lyn likes to spend money.  She likes to use whatever she has in her purse and gets grumpy if she cannot.  Giving her the coupon made the desire to shop more intense for her.  She had to use the coupon because I gave it to her.  Mom promised that they would find something and that the coupon would be used before it expired.

While we had done a little shopping together, Mom had kept trying to steer Lyn away from stuffed animals because she has so many already.  That worked while I was there.  I could interject and ask for Lyn's opinion on something for one of my children.  That didn't work the next day.

She picked out a stuffed Winnie the Pooh and insisted she had to have this item because of coupon I had shared.  As you can see from the picture above, it was not worth a fight to suggest another item.  She bought a stuffed animal which is what she really wanted and she used the coupon.

She's actually happy in the above picture, I promise.

Oh, how her face has changed in the last year...

Tuesday, April 22, 2014

The First Cinderella

I don't remember Lyn loving Cinderella so much when we were kids.  Sure, Mom had taken us to see the movie in the theaters.  She took us to all of the Disney movie (re)releases over the years.  We had Barbies, Weebles, Polly Pockets, Match Box cars and even some Sesame Street themed toys.  However, I don't remember any Disney related toys from our childhood.  Then again, we were young in a time before there was a Disney Store anywhere near us and before the princess culture really exploded.  So, where did Lyn pick up this love of Cinderella?

About 9 years ago, some cousins visited from a rural town in Kansas.  They didn't have a mall anywhere near them and asked to spend time at a mall as part of their visit.  Mom is happy to accommodate the interests of her guests and Lyn's always open to going shopping.  So, they went.  The Disney Store was a relatively new addition to the mall and Lyn wanted to go in as soon as she spotted it.  

As they entered the store, a young woman greeted them and asked them to wait for her for a moment.  She was the manager.  They meandered through the store as they waited to find out why the manager wanted to speak with them.  Mom was doing her "We're just looking; not buying" song as Lyn considered one object after another.  Thinking that nothing was going to happen after several minutes, Mom suggested they leave.  

"No!  She told us to wait."  Lyn objected just as the manager returned to the floor from the back room with an item in her hands.

She came straight to Lyn and showed her a framed hologram of Cinderella.  "Here's something I thought you would like to have." She said as she offered it to Lyn.  She smiled and explained that it was a promotional piece and she had discretion as the store manager to do whatever she wanted with it.  She saw Lyn walk in and decided in that moment to give it to her as a gift.  Lyn was thrilled!  About that time, she noticed the manager's badge and got even more excited because they shared first names.  

The manager accepted Lyn's thanks and stepped back, still smiling.  Mom asked "Why?" motioning to the little girls around them who were clearly interested.  The manager just shrugged and said "it just seemed right."  With that, the interaction was done as she was called to the counter to help a paying customer.  

The picture has hung on Lyn's wall ever since and it was the first of several Cinderella items she's acquired.  She loves it.  

When I asked Mom about Lyn's love of Cinderella, this was the earliest connection that Mom could recall.  So, I asked her to take a picture of Lyn with the hologram.  I know the picture doesn't really convey her emotions, but Mom assures me that Lyn was really quite happy to have the picture taken for me.  That's one of the things about Alzheimer's.  The exterior expressions and body language don't always match the interior emotions.


Monday, April 21, 2014

Easter Trading

When I called Mom and Lyn yesterday, Lyn asked me how much candy the Easter Man left me.  He left her a bowl full with extra in another bowl.  Just as a reminder, Lyn always says that the Easter Man leaves her candy.  She has never said it was the result of Mom or the Easter Bunny.

This week's visit from the Easter Man was notable for two reasons.  First, he didn't put the candy for her in the Nambe bowl he has used for the previous years that Lyn can remember.  This provoked her to comment on it multiple times in the day.  The second reason this year's Easter Man visit was notable was that it coincided with the misplacement of Mom's regular reading glasses that she normally keeps on her kitchen island.  They're not where she keeps them.  They may be in a drawer or in a different room.  They may have even fallen into the trash and been taken out already.  Or, as Lyn suggests, the Easter Man may have taken them when he left candy in the house for her.

Perhaps the Easter Man needed Mom's reading glasses.  If so, he's welcome to them.

Friday, April 18, 2014

An Open Letter to Disney

Dear, Disney;

How do I adequately thank you for the gift you gave my sister Lyn in her recent visit?  You gave her a moment that enchanted her and that paused time around her.  You gave my Mom and me a memory that we will keep for her for the rest of our lives.  You see, my sister has Early On-set Alzheimer's and is rapidly loosing her ability to remember basic skills, names or memories laid down in her own recent history.  She's long spoken about wanting to visit Disneyland and we were able to make that happen earlier this month.  You, dear Disney, made the rest happen and, for that, we are deeply grateful.

When we surprised Lyn with the news of the trip to Disney, she made no particular requests.  She was just happy to go.  I had made it my personal goal to try to get her to meet a Disney Princess, especially Cinderella.  Cinderella has long been Lyn's favorite princess and graces numerous items in her room. 

After checking into City Hall on the first day of the visit, we headed over to the Royal Hall and waited in line to meet a princess.  The line moved quickly and the little girls around us bounced in excitement as they waited their turn.  Lyn was patient.  She knew we were in line to see the Princesses but it didn't seem to connect with her what that meant.  She was soon ushered in to meet Ariel.

Ariel was gracious as all the Disney Princesses were.  Lyn was happy to meet her because she is so pretty, but there was no connection.  (You can see how her body is turned away from Ariel in the above picture.)  It was just another character experience.  A few words were exchanged and a half-hearted hug was issued for the obligatory picture.

The same was true when she met Aurora at the end of our time in the Royal Hall.  Aurora welcomed Lyn and congratulated her on her first visit to Disneyland.  She tried to engage Lyn in conversation but was mostly unsuccessful through no fault of misstep of her own.  

Lyn's interaction with Cinderella, however, is a very different experience.

From the moment we turned into Cinderella's nook, Lyn was captivated.  I heard her breath catch as Cinderella greeted her and welcomed her into the nook.  I quickly remembered to pass the photo pass card to the photographer who began taking pictures.

Cinderella expressed delight at Lyn's visit and acknowledged it was her first time in Disneyland.  She asked Lyn what was her favorite part of her day so far and Lyn whispered "Meeting you!".  Cinderella took her hands and continued to speak to Lyn.  

I don't remember all that they said because, to be honest, I was crying.  I heard Mom whisper "I'm not going to look at you or I'll cry too."  Cinderella must have heard us whispering because she tried to coax us into a picture.  "No, thank you.  I need to stay behind the camera today.  This is for her."  I replied.  Cinderella turned back to Lyn to devote more time and attention to her.

The court photographer saw the tears streaming down my face and came to rub my shoulder.  "Are you OK?"  he asked.  "Yes.  She has Alzheimer's and won't remember this for too long.  But, we will."  He took 15 pictures of Lyn and Cinderella over the course of about 10 minutes.  I thought it was closer to 5, but the photo pass time stamps prove that we were unaware of the passage of time.  

At no point were we made to feel like we needed to move along.  We were loathe to break Lyn's enchantment with Cinderella because making a connection is so difficult for an Alzheimer's patient.  We were so happy to see her make that connection and to see her filled with happiness and awe simply because Cinderella greeted her and made her feel special for the time they were together.  In that moment, no one and nothing else mattered.  The meeting with Cinderella made the entire trip worth all that went into it.  

So, thank you, dear Disney, for giving us this gift of a moment.  Thank you for letting my sister feel connected to Cinderella in a way that we could not really hope to witness.  Thank you for making her feel like there is magic and that it was around her.  Even when she forgets, we will remember and we will forever love Cinderella and her kindness to Lyn.

Most sincerely,

Lyn's Sister

Thursday, April 17, 2014

Disney Character Encounters

Through out the Disney parks, the various characters come out to spend time meeting the guests and posing for photos.  Their time is limited and lines quickly form as folks are eager to get an autograph, a hug and a picture.  We had a couple of missed encounters, but there were so many available to Lyn that she was happy with what she did experience.  Some of the characters even pulled her out of the crowd for a hug which delighted her even more.

There were characters in cars who waved to the crowds.  Lyn waved back and called out to Goofy and Pinoccio.  I'm pretty sure she didn't know the names of Chip and Dale.  That's OK.  She liked waving to them.

She got hugs from many of the characters over the course of her three day adventure.  Pluto was sweet with her.  He's a big flirt!

Cruella was brusk with most visitors.  She would say things like "Hurry up, darling.  I don't have all day!"  She said nothing brusk to Lyn and patiently stood for a picture before rushing off to hunt for more puppies.  

She was much less gentle with me and I felt very anxious just trying to get a picture with her.  I loved it though.

The next day, Minnie gave her a hug before returning to the bakery to make more cheesecake.

She was also excited to see Tigger.

She was pulled out of the crowd to dance with Phineaus and Ferb.  It overwhelmed her and she froze.  Afterwards, she kept saying that my youngest would have loved that encounter.  She's right.

She was impressed with the height of Frozone.  Since she didn't know who he was, she was not interested in a hug.

She wasn't too sure about meeting Flick either but gamely posed for a picture.

Goofy appeared to conduct the music and water show at the Pier in California Adventure park.  When he was done, he bounded down from his stand and grabbed her for a hug, much to the consternation of his tender.  She was excited.

The character encounters were an important part of what made Lyn's trip to Disney so successful.  They were small moments, for the most part, but they delighted her.  She would get excited when she recognized one and loved that she could get a hug.

At one point in her trip, she wanted to see the Muppet movie experience.  So they went to that location in the park and quickly discovered the experience was no interactive and did not have characters to encounter.  The Muppet movies were played to screens.  Lyn was hot, tired and suddenly disillusioned.  This is not what she wanted at all.

Lyn spotted an employee named Chris and proceeded to ask him a number of questions, conveying her disappointment.  Mom could see a melt-down brewing and knew she needed to get Lyn to a spot where she could cool down physically as well as emotionally.  Chris asked them to wait just a moment.  He wanted to do something to try to make Lyn happier and less upset.

He took them into a gift shop where there was some air conditioning and hurried into the back.  He came out with a receipt book and asked Lyn to pick out an item that she liked.  The majority of the shop was filled with Muppet themed items and Lyn quickly spotted a shirt she liked.  Chris logged it into the shop's receipt book and the clerk bagged up Lyn's shirt.

Mom was stunned.  Chris was giving the shirt to Lyn free of charge because he wanted to make up for her disappointment.  To Mom, he had perceived that Lyn was having difficulty understanding the nature of the Muppet experience and wanted to help.  It was a kindness that was unexpected.  It worked.  Lyn was mollified and a melt-down was avoided.

If Chris should ever read this:  Thank you.  Your kindness and care for the park's guests is greatly appreciated.  I've read about some of what Disney employees have done to make customers happy.  Many of those stories touch me.  I never anticipated that we would find ourselves in such an experience.  

Wednesday, April 16, 2014

Disney Adventures

Lyn's days at Disney can only be classified as a huge success.  She was captured by "The Happiest Place on Earth" and was able to direct where she went and what she did.

We arrived pretty early on Saturday.  (Please ignore the Sun position above. I took that picture at the end of the day).  It was our one day to spend together before my conference began.  I wanted to make the most of it and the few goals I had set without consulting Mom and Lyn were within the realm of possibilities; meet a Princess, ride the carousel, have fun.

We started off with a quick check in at City Hall.  This allowed us to secure a disability pass for Lyn. While we didn't use it for timing our arrival at the rides, we quickly learned that we could show it to an employee when ready to board a ride to alert them to Lyn's mobility issues.  Her lack of depth perception and her shuffling gait require an extra hand or three when boarding or debarking rides.  

The very kind clerk in City Hall realized we were first timers to the park and whipped out buttons that declared it was our first time there.  The buttons caused every employee we met to congratulate us on our first visit, ask us what we've enjoyed so far and generally make a small fuss over us.  Lyn loved the attention and started approaching staff about half way through the day to declare "Today is my first time here!"  

After City Hall, we rode the Omnibus over to Cinderella's Castle.

Lyn dutifully posed for a picture in front of the castle.

From there, we went to the Royal Hall in search of a Princess before riding the Jungle Cruise.  (More on the Princess encounter on Friday.)  

Lyn needed an extra hand getting in and out of the boat.  She enjoyed the ride and laughed at some of the jokes.  Mom was excited about the Jungle Cruise as well, having wanted to ride it ever since she was a kid and Walt Disney would give weekly updates on the construction of the park in each Sunday's Wonderful World of Disney television show.

When we perused the souvenir shops, Lyn played along when we asked her to put on some ears.  She didn't want to buy any, but she did let me take a picture.

She humored my request to ride the carousel and the train.  

We even got her to go on the Mark Twain paddle boat.  She wanted to go on the Pirate ship but that had to wait for the next day.

Not long after this picture was taken, we decided it was enough for one day and headed out of the park.  The second day followed much the same way.  The third was spent at Disney's California Adventure park which was right next to Disneyland.  While I was not there with them for the second and third day, they had a wonderful time at each.  

Tomorrow, we'll look at the character encounters Lyn experienced and Friday, we'll wrap up with the Princess story.

Tuesday, April 15, 2014

A Little Surprise

A little over a week ago, Mom and her lovely neighbor went to pick Lyn up from day hab.  While they were there, Mom announced to the staff that Lyn would not be at day hab on for three days because she was going to Disneyland.

As Mom was talking, her lovely neighbor was ready with the camera to snap a picture of the moment Lyn realized what was being said.  Lyn was immediately excited and expressed regret that some of the day hab staff were unavailable to share in the good news right then.

Mom and I had planned this for a couple of months.  I had a work conference scheduled there in Anaheim and could arrange an extra day there to spend some time with them.  Mom and Lyn could fly in and have a vacation that they both have wanted for a very long time.  My conference turned out to be a great excuse.

The next morning, they flew to California and took a shuttle to their hotel.  Lyn, at that point, still thought the surprise was just for the two of them.  She knew I was away at a conference but had not realized my conference was in California or that I had arranged to meet up with them.  My flight into LAX from the East Coast actually placed me there several hours before their arrival.  When they arrived, Mom called to tell me and included "We'll talk to you in a few days."  That call allowed me to meet them at the lobby of their hotel.

I didn't step out to greet them.  I tried to sneak a picture or two of them through the lobby window as they unloaded from the shuttle.

She spotted me and recognized me even through I was out of context.  Mom, of course, played along.

She was not mad to see me despite how this picture looks.  She was excited and completely surprised.  It started her Disneyland trip off on a good note.

After getting checked into their room, the three of us were able to walk down the street for a bite of dinner.  Lyn had done well on the flight and was so happy that there was no issue with being out as the sun was setting.

That night, they discovered that their hotel room gave them a perfect view of the nightly fireworks at Disneyland.  All they had to do was open the curtains to enjoy the show.

Monday, April 14, 2014

PSA on Elder Travel

Dear Readers,

If you have a loved one who is showing the least bit of memory loss, confusion, or inability to follow multiple steps of directions, PLEASE ensure they are accompanied by another person when they travel.  Please, do not let them travel on their own because the risk of getting lost is high.  If they have dementia, even if they seem fairly capable, do not rely upon the airport staff to get your loved one where they need to go.  It may not turn out as you intended.

While Lyn travels with a companion, not every individual with dementia does.  To illustrate, I will share what happened to me this week that prompted the above plea.  As I sat crocheting while waiting for my plane to fly home, I realized an elderly man was standing beside me looking around.  I motioned to the seat beside me and invited him to have a seat.

"No, thank you.  I walked away from my bag and I'm trying to find it.  It is blue."
"Do you need some help?" I asked.
"No, thank you." he muttered as he wandered off, looking in each cluster of seats for his bag.

I slowed my stitches and started paying more attention to him as he moved slowly around the six gates around us.  His search was haphazard and I realized his clothes were a bit disheveled.  I became more concerned when I saw him just stop moving to stand in place.  I stuffed my lace into its bag and hurried over to him.

"Did you find your bag?"  I asked.
"Did you find your bag?"  I repeated and saw the interest come into his eyes.  I had just prompted his memory and my heart sank.
"No.  I don't know where my bag is.  It is blue."
"Are you here with anyone?"  My hope was quickly diminishing for his ability to manage the chaos of LAX airport on his own.
"Ok, then.  Let's get you some help.  Is that OK?"  I started scanning the crowd for airport personnel who were not engaged with boarding passengers.
"Yes, please." he responded right as I spotted someone.

I asked the man to stay right there while I rushed to the employee, calling out to him before he could get too far into the crowd.  Fortunately, he heard me and turned.  "Can you please help?  I am very worried about an elderly gentleman who has become separated from his bag and seems confused."  The employee worked for American Airlines and he was immediately attentive.  I took him to where I had left the gentleman.

A short series of questions was asked of the gentleman and we learned he was indeed alone and had been brought to the gate area in a wheel chair.  He didn't know where his wheel chair was parked.  He wasn't sure where he was going and didn't remember who was to meet him there.  He didn't know where his ticket was.  His ticket was poking out of his shirt pocket.  It had his name and destination.  The employee got onto his radio and started requesting assistance, signaling to me that he was taking the man into care.

I rubbed the man's arm and said "He's going to help you now.  Is that OK?"  "Yes."  I took my bags and hurried back to my gate where they were already boarding.  Before I had to go down the jetway, I turned back and saw 5 employees around the gentleman and I worried.  I assume he got to his destination because I've seen no reports of a lost elderly man flying between Los Angeles and Nashville.

Friday, April 4, 2014

Soon to Resume

It is that time of year when my employer gathers our clients together for networking and education.  In other words, I'm off to the annual conference where I stay up too late, talk too much  and walk more miles than I should in heels (they'll be lower than in years past).  I won't be blogging while I'm away.  I won't even attempt it this year.  So, I wish you well while I'm running the halls of the conference center from session to session.

Dementia be Damned will return on Monday, April 14.

Wednesday, April 2, 2014

Creeping Fog

When Lyn woke up on Saturday, she was in a fog.  She put on her robe and sat on the couch, just staring into space.

After about 10 minutes, Mom asked if she wanted to color.  "No thank you."

A few minutes later, Mom asked if she wanted to play Bingo.  "No thank you."  She would occasionally reach down to pat Nikka's side without really engaging with the dog because she was still mentally elsewhere.  There was no real expression to her face and she was not focused on anything.

Mom decided to initiate activity and asked Lyn if she could help make some cookies.  "No thank you."  So, Mom proceeded to measure and mix as Lyn sat and drifted in her fog.  It wasn't until the cookies were half way through their bake period and their smell was beginning to permeate the house that Lyn started to stir.  She peeked at them through the oven door and then sat at the table to look at the stove until they came out.  When they came out, she got up and studied them before advising Mom that a taste test was required.

She ate one, declaring "Not bad" and then decided it was time for a bath.

The fog is creeping up on her more and these moments of being lost in it are increasing.

Tuesday, April 1, 2014

Derek Martinus and Doctor Who's Alzheimer's

Derek Martinus, an early director of the long-running sci-fi series Doctor Who, passed away last week as a result of Alzheimer's.  He was the first director of the series to direct in color.

While a number of Doctor Who stories have touched on the theme of forgetting, such as anything dealing with Silence or the end of Doctor Donna, I thought that the series had not touched on dementia or Alzheimer's.  In fact, it has.  In 2002, Relative Dementias by Mark Michalowski was published.  In it, the Doctor is asked if Time Lords get Alzheimer's.  Alzheimer's has also been touched on several other times by the series.

I always find it interesting when series touch on difficult issues because it allows the topic to be discussed publicly and collectively.