Tuesday, December 31, 2013

Ringing in 2014

Lyn does not ring in the New Year.

For her, it will be a quiet day with perhaps an errand or lunch out with Mom.  If she says up late, it will be because she's more nervous about hearing gun shots or fireworks than any other reason.  However, if she starts to fold up early, Mom may be able to convince her to go to sleep before the New Year's maybe begins around them.  She folded up night before last at 5:30.  So, it is entirely possible that she'll be deep asleep beforehand.

Nights like this are hard on Alzheimer's patients because they do not understand what the sounds are or from where they originate.  This leads to fear and confusion.  However, the New Year's transition can be an opportunity to help the individual spark strong long-term memories if favored music or movies from their earlier years may help them enjoy the day.

If you spend the New Year's holiday reminiscing with friends, lifting a glass of bubbly or quietly at home, may the end of 2013 and the beginning of 2014 be a time of happiness and peace for you.

Happy New Year.

Friday, December 27, 2013

A Busy Season

Lyn had a busy holiday season.

She had multiple visits with Santa, a holiday open house, a trip to Christmas Town at the local amusement park and, of course, an opportunity to unwrap her gifts.

As the holiday season winds down, I leave you with this:

Thursday, December 26, 2013

Nikka's Gift

I spoke with Mom and Lyn yesterday morning to see how the gift unwrapping went.  Lyn was happy.

She liked the shirt we gave her as well as the oversized coloring book.  She liked the new blanket Mom gave her.  She was happy with what Santa gave her but miffed that he didn't eat both of the cookies that were left out for him.  The explanation that he gets so many cookies as he works did not mollify her at all.

When she and I spoke, she called out the socks that Nikka gave her.  Nikka gave her two pair of socks with bowling pins on them.  They are her new bowling socks and she was so excited that Nikka went shopping and knew what to get her.

I wasn't sure if she was joking or not.  I don't think she was.

Tuesday, December 24, 2013


Traditionally, the people of New Mexico complete their Christmas decorations on Christmas Eve.  While they may have had lights up or even lawn decorations for days before, the decorations are not complete until the luminarias are set up and lit for the night.

Mom has never decorated the outside of the house using lights.  However, luminarias have been as much a part of my family's traditions as any other.  Lunimarias were put in front of my Grandparents' home, in front of Mom's and, occasionally, in front of mine.

Lyn's been a regular participant in getting them set up.  Over the years, she's helped fold the opening of the bag down to give it a bit more strength.  She's helped fill the bags with sand and set a tea light in each one.  On Christmas morning after gifts have been unwrapped, she even helps with the clean up.

May your holiday be filled with love and light.

Monday, December 23, 2013

Google Doodle to the Rescue

Shopping for Lyn is very difficult.  I believe I've mentioned that previously.  If I see something that seems like something she'd like, I try to get it right away so I don't miss out on an opportunity.  

Nearly a year ago, I saw that Google had posted a Google Doodle celebrating the 120th Anniversary of the Nutcracker Ballet.  Lyn loves the ballet.  She watches each time she can catch it on TV.  I remember we watched it annually growing up as well.  She has a CD with the soundtrack.  Each year for the past several years, Mom has taken her to a live performance.  She could easily watch it daily.  When I saw the doodle, I thought of her and how much she loves the ballet.  That's when I spotted a link to the Doodle Store.

I bought her a shirt with the doodle on it.  She'll never realize that it spells out Google.  She will, however, recognize that it represents her favorite ballet.  

Mom can show Lyn the above video link and tell her that today's post is about the performance they saw over the weekend.  Then, when she unwraps her present on Wednesday, it may help spark that connection for her.  I hope she likes the shirt.  

By the way, they both enjoyed this year's performance much more than last year's.

Friday, December 20, 2013

Yes He Is

I spoke with Lyn last night to see how her day went.  She was very excited about the video message from Santa.

Mom had shown it to Lyn early in the morning.  She watched it twice before making her bed.  As I suspected, she held her breath and sat at the edge of her seat.  She was amazed that he had her picture.  She told me he had a machine which said she was on the good list.  She knows the machine is right.  She said that lots of people from the North Pole were in the video.  "There were lots of boys and girls in it eating popcorn."  I think this is the first time she didn't realize they were elves.

Most of all, she was flattered that he "said I look good in my new glasses!"
"Well, he's right!"
"YES He IS!"  She was so emphatic, stressing each word.  I couldn't help but laugh.

Well done, PNP.  Well done!

Thursday, December 19, 2013

Santa's Message

Each year since I learned about the Portable North Pole, I've used their service to send a personalized message to Lyn.  She LOVES it!

The site allows me to select from predefined message options to tailor the message to her.  It may seem a little stilted at points but she won't mind.  Santa will say her name and she'll see her picture.  She'll sit with her nose close to the computer and hold her breath as she watches with every fiber of her being.

I created this year's message for her over a week ago but there were problems with the site this year.  I was getting worried that she wouldn't get her message from Santa this year.  Fortunately, it appears they have finally gotten the issues resolved and we can now watch the video.


Wednesday, December 18, 2013

Rule Changes

I'm sitting here listening my husband and eldest play a game as I contemplate what to write.  It strikes me that the game they are playing is a good metaphor for dementia.  The game is Fluxx.

Why would a card game be a good metaphor for dementia?  Well, with each turn, the rules can change.  With each turn, the conditions to win can change as well.

With dementia, especially the aggressive early on-set Alzheimer's variety, each day can present an apparent different set of rules that the dementia patient is following or that the care givers have to follow.  For example, we've seen days that Lyn likes hot chocolate and the next she says that it doesn't sit well with her.  Each day is a win if the day was a good one.  Those conditions also can change daily.  Perhaps the winning condition is to get through a doctor's appointment without a melt-down or to get a full meal into the patient.

A caregiver has to have flexibility and constantly read the dementia patient in order to navigate all the variables which are presented in the moment.  When you play Fluxx, you have to have that same approach.  You need to constantly be aware of the rules, keeping an eye on the goal and what it takes to meet the winning conditions.

At least in Fluxx there is a Rules Reset card.

Tuesday, December 17, 2013

Turned Out OK

After my conversational misstep, Mom and Lyn were hosting the staff from day hab for some posole and Christmas cookies.  Fortunately, Lyn's mood improved quite a bit and she took on the role of hostess for their guests.  Mom writes:

Wish you could have seen your sister yesterday.  A few minutes after 1, she wanted to know if she "should go out on the sidewalk" since no one had arrived.  About 2 pm, a couple of folks arrived.  We ended up with 15 guests spread over the afternoon, all from day-hab.  The client and staff who live at the other end of the neighborhood showed up.

Lyn greeted each person as them came in and ushered them to the food.  She kept tabs on who might need more of whatever they had.  There were 2 clients, not as high functioning as she is and she was a mother hen.  It was so good to see her like this.  She circulated, chatted, pushed food and, was smiling.  As they left she thanked them for coming, walked them to the door.  I'm not sure why I was here.

Two ladies came about 3 pm when it was calming down.  She kept saying that one more guest must have gotten lost.  I assured her that they would arrive soon.  They got here and soon it was just the two of them and the two of us.
I could tell that Lyn was tired.  She had been cleaning things up, throwing plates away and glancing at the clock.  She came and stood next to me and I put my arm around her.  She bent down and whispered to me "they need to leave."  I wanted to burst out laughing but suggested she go take a bath.  "No, we still have company."  So she sat back down.  They did get up to leave a few min later and we walked them to the door.

As they left she did "scold" me for keeping them till after dark.  I said it was ok.  She asked if she "should" help me clean up.  I said she had done a lot of work and should go bathe.  Relief flooded her face.  I was almost done when she finished.  She went to bed at 8 and was snoring by 8:05.  

It was a good day.  I'm glad I did it and she was more help than she's ever been.

Monday, December 16, 2013

I Made a Mistake

I made a mistake while speaking with Mom and Lyn via Skype this weekend.  I vented and I shouldn't have done that.

It was a tough week and my eldest child's behavior this weekend was just the capper.  I know I can speak freely to Mom and she was providing an understanding ear while I let off a little steam.  Unfortunately, Lyn took it personally.  She understood I was mad by my tone of voice and my body language.  She didn't follow the train of the conversation and thought I was mad at her.  She got up, went into the other room and started crying.

Mom went to calm Lyn down, assuring her that no one was mad at her.  She convinced Lyn to come back.  As soon as she sat down, I apologized for upsetting her.  I assured her that I wasn't mad at her.

Listening to me apologize for upsetting her
Mom and I quickly changed the subject to focus back on Lyn.  I asked her about her day out with her respite provider yesterday and then got her to tell me about the Christmas dance she attended Friday night.  That got her animated and happy again.

She was excited because she was called up to dance with Santa at one point.  She was the only one to dance with Santa.  I asked her if Mrs. Claus knew that Santa danced with her.  "No!  Mrs. Claus was at the North Pole!" I repeated that back to her and she followed up with "Santa can tell her I danced with him.  I don't mind."

Lesson learned; positive topics only when Lyn can hear the conversation.

Thursday, December 12, 2013

Your Kindness

Yesterday's post led a number of you to reach out to me or to Mom.  You expressed words of kindness and support.  Some of you searched Ebay and Amazon and found some Speak and Spells available for purchase.  You even offered to pick one up for Lyn if we wanted.

We thank you!  You made us both smile and we appreciate each message of support you sent.

Mom actually found Lyn's old Speak and Spell in the garage while Lyn was at day hab.  She's getting it  cleaned up and made ready for Lyn to use again.

Thank you and know that your comments, your notes and your searches touched us both very much.  You are all wonderful!

Wednesday, December 11, 2013

Going Through the Motions

The other night, Mom made a comment about how this Christmas is hard because she knows her daughter is dying.  I asked her to elaborate and she wrote:

You asked for my thoughts.  Hope this will make sense.

I have always loved the holidays.  When I lived in Italy, I had a houseful of people each day.  I love the baking, cooking, cleaning and general confusion.  I love seeing the smiles and hearing the squeals of the little kids, the anticipation each day brought.  I think I worked hard, as you kids were growing up, to make this a magical time of year.  I didn't succeed but that's another path. 

Since Lyn still believes in Santa, it has been easy and fun to keep the magic alive.  Well, she still believes but that memory goes waaaaay back.

When I was told she has Early On-set Alzheimer's, my first reaction was "Ok, what do I need to do to make her life a good one."  Today, I realize that I handled this the same way I handled stage fright.  It didn't hit me till after the final performance of a play.  Well, it's been 3 years and the same thing is happening.  My head accepted her new diagnosis.  My heart is just now catching up with all this.  My head knows Alzheimer's is a terminal disease.  My heart hadn't accepted that.  

A few weeks ago, my heart opened up and realized that my daughter is dying and I can do nothing about it.  It's a fact of life!   The consequence?  I can't really get into the holiday spirit the way I wanted to.  I usually begin baking in early November.  I'm just now getting it done.  I usually have my cards ready to mail in October.  I did them in mid-November.  I usually shop all year and have things ready to mail out December 1st.  This year, I got everyone just one present, except her.  The boxes have been mailed but my heart isn't in this.  

Lyn doesn't want me to know what she wants for some reason.  She wants a new Speak and Spell.  They don't make them and haven't since 1992.  This is a surprise because she hasn't touched one in probably 5 years.  Perhaps her memory is back to when she played with one.  This is the first time in 42 years that I can't get what she really wants.  I try not to feel guilty about this but want to find a NEW one.  

So, I'll go thru the motions and make it good for her, make it fun because I think "will this be the last year she'll truly enjoy?"

Guess I'll go bake some cookies.

Tuesday, December 10, 2013

Santa Smiles

Lyn wen to the Casino on Saturday and ran into Santa.

She was so happy that she insisted on showing me this picture when we Skyped on Sunday.  I love to see her this happy.

On a side note, two things I noticed in connection with this picture.  First, she when showed me, she was so shaky and unstable that Mom had to reach out and steady Lyn's hand.  Second, when I finally saw the picture up close, I realized Lyn had clenched her right hand into a fist.  

Monday, December 9, 2013

Decorating Doesn't Make Sense

Each year for Christmas, Mom enjoys decorating her home for the holiday.  She sets up a tree, a couple of nativities and just a few Santas.  This year, I think she only put up about 63 Santas.

In order to get the decorations down from their upper shelf storage in the garage, Mom benefits from a little help.  She climbs the ladder and asks Lyn to take what is passed down.  Mom writes:

     I had struggled to get the tree box up on the top shelf in the garage and didn't want to get it
     down without help.  So I had her help me.  She couldn't understand that I wanted her to "catch"
     one end so it didn't fall.  Well, it got down with much direction.  

     Then I thought she could help put Santas up on the plant shelf.  I didn't put them up last year.  

     So, as I brought the ladder in I tried telling her what I wanted.  I would get the pottery down, hand
     it to her to put on the island.  She said "OK" but had the blank look in her eyes.  Then it dawned
     on her as I got up the ladder and reached for the first piece.  "You should just leave them there.
     No one will know."  

Lyn eventually was able to help Mom move the pots from the shelf to the kitchen island.  She wasn't happy about it, but she did cooperate.  Lyn did make it clear that she would have nothing to do with decorating the tree.  She told Mom that Mom does it better and decorating is just too frustrating now.  She's probably right.

Friday, December 6, 2013


One of the things I observed last week while Lyn was here surprised me.  Lyn carries a soft, squishy ball in her purse.

It is the kind of ball that my kids take to the pool.  I think they're called water bombs or splash bomb.  The ball is made of foam and is covered in a bright, multi-hued nylon cloth.  I asked why she had the ball in her purse (because I am her nosey little sister who blogs about her).  It turns out the ball was given to her by her speech therapist.  It is easy for her to grasp and squeeze.  She reaches for it when she's stressed out.

Now, I have to admit that I had a series of thoughts that essentially went something like this:  "Stressed out?  What does she have to be stressed out about? She doesn't have to worry about bills, kids or work. She doesn't have to worry about getting someplace on time because she's taken everywhere she needs to be.  She is catered to and cared for.  What does she have to stress about?"

I kept my mouth shut and let her show me how she squeezes it when she needs to calm down.  That's when it clicked for me.  She doesn't have to have bills, kids or work to be stressed or anxious or irritable.  She's got a brain that is diseased and that is reason enough.  Aside from knowing that she has Alzheimer's, the brain itself is probably inducing the stress related feelings because, as different areas are impacted and cells die, the signals in her brain are not being sent and received as they once were.

So, while her stress is of an internal origin, it is just as real as stress you and I may feel.  Unfortunately, she's got fewer resources or skills at hand to manage her own stress.  The ball appears to be a good option for her right now.

Additional Information:
Progression of Alzheimer's disease may be slowed by stress reduction through meditation
Stress-Related Protein Speeds Progression of Alzheimer's Disease

Thursday, December 5, 2013

Day of Attitude

Yesterday, Lyn was full of attitude.  She was ready for a fight.  I could hear it in her voice when I called to check up on her and Mom.  Apparently, the attitude had been there all day.  She was demanding and agitated even at day hab.  The staff had to let Mom know of Lyn's rude behavior.

The theory of the day was that she was agitated and worried because there's a major winter storm heading their way and she's afraid she won't be able to bowl this afternoon.  That's just a theory.  She's not yet gotten into anyone's face or yelled at another person.  So, the plan is to keep tabs on her and see if her attitude clears with the weather.

By the time the storm is over, if her attitude has not improved, we'll have to look at other options to help her manage her emotions.  It may not be the weather after all.  It may be the dementia and its aggression.

Wednesday, December 4, 2013

Post Travel Thoughts

There can be fall-out from a decision to have a dementia patient travel.  

During the trip you should expect more exaggerated emotional responses.  If the person is likely to cry, anticipate tears.  If the person tends towards aggression, anticipate a shorter fuse.  If the person is one who wanders, consider temporary door alarms or even a black rug or towel in front of the door.  I have not yet tested the rug, but the theory is that it is perceived to be a hole and not crossed.

After the trip is over, it will take the patient longer to get back into their own swing of things.  You may find the person sleeps longer or is more confused.  You may find that they are unable to recall specific events experienced on the trip.

Just hang in there.  Things will sort out and within a few days, the individual should feel more settled by having been returned to their familiar environment and routine.

With Lyn, we saw increased agitation on the day she and Mom returned home.  She showed more confusion at the airport and even start to head to "her"gate in the wrong direction.  Mom was quickly able to wrangle her.  The following couple of days also saw an increase of sleeping which may have additionally been triggered by her period starting extra early as well.  At one point, Lyn  asked if they could come back to my place next year.  A few hours early, she cried while saying she didn't want to come again because it was too hard.

It was a challenge and we significantly modified how the visit was conducted.  However, we are very glad that we did it.  Lyn got to see our brother and his child.  Mom got to spend Thanksgiving and her birthday with her children and grandchildren.  All of this and the quiet moments we had together made it absolutely worthwhile.

Tuesday, December 3, 2013

Of Rainbows and Short-Term Memories

My front door faces nearly due West.  As a result, the setting Sun shines fully on the door and beams through my peep-hole.  This throws a circular rainbow on the opposite wall.

When Lyn and Mom arrived, Mom spotted the rainbow and showed it to Lyn.  Lyn was amazed and excited by it.  She asked what was causing it and we showed her the sunlight coming through the peep-hole.  

Each subsequent afternoon of their visit, Lyn noticed the rainbow and never remembered having seen it before.  She would become excited by it and we'd hear the same "Wow!  That's beautiful!  Mom!  Come look at this rainbow!"  Each day, Mom would come and dutifully look at the rainbow.  On some days, Lyn asked how it was happening and we'd explain it.  Some days, she did not.  

At no time, did Lyn show any indication that she'd had the same conversation previously.  After seven days, it was still new to her.

Monday, December 2, 2013

Family Visit

Friday was Mom's birthday.  My youngest just couldn't get over her age and kept saying it through out the entire day like it was some novel number never previously considered.  Prior to their visit here, I asked Mom how she wanted to spend her birthday.  She said that all she wanted was to have her kids together.

It has been years since the three of us were together in one place.  We got the message, however, and were able to pull it off.

Lyn helped by making a card for Mom which said "Happy Happy Birthday."  It had a rainbow and a flower on it.  Lyn insisted everyone sign it.  She made it Thursday afternoon after dinner when Mom had slipped upstairs to sleep off a bit of the food coma.

On Friday morning, Lyn and I went out to pick up a cake from my favorite local bakery.  The cashier behind the counter was new and asked if we needed cake with our Thanksgiving left-overs or if there was a birthday.  We assured him that a birthday was involved.  He clearly wasn't sure what to do when he heard the lady behind us selecting two cakes.

My brother and his child arrived after we got back with the cake.  The kids all played together well and helped us sing Happy Birthday to Grandma after Aunt Lyn brought her card around for us all to sign.  Mom and Lyn were both relaxed and happy.

After lunch and cake, the visit continued until my brother had to head back South in time to get to work for the night.   Lyn was happy until the party broke up.  Even though she knew they had to go, she broke down and cried.  Mom wanted to go out to dinner and so we went for an early dinner.

Lyn was a bit withdrawn until we got to the restaurant.  Once there, her social nature kicked in and she perked up a bit, turning around and looking at everything as though it were all new.  (To her, I am sure it was.)  Each time she turned to look behind her, a waiter would hustle over to see if she needed anything and we had to keep assuring the staff that we were fine and she was just curious.  She just beamed when we encountered some long-time friends who happened to come to the same restaurant for dinner.  Once in the car, she withdrew again and was asleep before we got home.

Ah well… It was a good day and Mom was pleased with how her birthday went.

Friday, November 29, 2013

Picking Bones

After dinner yesterday, Lyn offered to pick the turkey carcass clean of meat.  She's done this for years and it makes her feel like she's got an important job.  It is a very useful job and I'm happy to let her do it.

Mom got her set up at the table so she could comfortably pick the bones and then watched for a few minutes to make sure it was going well.  Very quickly, Mom realized she needed to sit across from Lyn, using the excuse that she needed to finish her wine.  For the first time, Lyn needed direction to place what she had pulled off the bone into the correct pile.  There was one platter for the meat and one for the fat, skin and bones.  Lyn struggled to figure out which was the correct pile.

At one point, Lyn asked Mom "This piece is stuck.  Can I just bite it off?"  Mom encouraged her to use the knife that was on the platter.

I appreciate that.

Thursday, November 28, 2013

Thanksgiving 2013

Today, we will share a small feast.  We are going to watch the Macy's parade, work on a puzzle and play a game or two.  It will be a quiet day with no addional guests.  I am looking forward to it because Lyn offered to help me remove the meat from the turkey carcass after the meal.  I fully intend to put her to work.

We hope you have a good day filled with food and fun.  May you have friends and family helping make the day a success.  May your day be a happy one.

We thank you for reading and joining us in this journey.

Wednesday, November 27, 2013

Learning Each Day

Each day, we learn something new about my sister.  On Sunday, she liked hot chocolate.  On Tuesday, she did not.  On Sunday, she liked ketchup.  On Tuesday she did not.  She does not like almonds unless she sees you eating one.  

There are a few things we are not having to learn.  She still likes spaghetti and does not like posole.  To keep from guessing and getting it wrong, we just ask her.  When we ask, we are prepared for whatever answer she offers up.  If she says "No.  Hot chocolate does not agree with me." We just move on as if the statement has always been true and is not just true this moment.

With tomorrow being Thanksgiving, I am sure she will reject some of the day's offerings.  That is fine.  She will not go hungry.  She says she likes turkey but does not like dressing at all.  She does not like potatoes au gratin but does like scalloped potatoes which also have cheese.

Yes, they are the same.

Tuesday, November 26, 2013

Setting No Expectations

The leader of the Alzheimer's support group that Mom attends has spoken about not setting expectations when interacting with an Alzheimer's patient.  If we do, we set ourselves up for disappointment.  For example, during the later stages of Alzheimer's we hurt ourselves if we go in wondering or hoping if today our name will be remembered because it was last week or yesterday.  The name may not be there when we have an expectation of it being present leading to our disappointment or pain.

A friend wrote to me before Mom and Lyn arrived with similar advice.  She wrote "...remember that no amount of planning will make everything go smooth. But, do remember that even if you burn the turkey because you have a moment with Lyn or your Mom and forget it is cooking, (or if) you make a perfect bird but someone spills the wine causing a meltdown, or if, well, the human psyche just shuts off creating an odd sense of strained silence . . . roll with it. It is worth it in the end."

She points out that the perfection of the meal or the idealized vision of my family gathering is not the important bit.  Instead, it is important to be in the moment, this moment, the here and now and right this minute moment because we won't get a redo.  It is important just that we are here.  The food is there to keep our bodies going.  Our minds and our hearts are nourished by the interactions we foster with each other.

With the prescient advice of both of these ladies in mind, we're setting no expectations for Lyn any longer.  Each day is different with her.  Each day is another opportunity to take a picture, make her laugh or try to keep her engaged with the world around her.  Some days, like Sunday, she meets it with flying colors.  Some days she's going to struggle.  Some days are in-between.  Yesterday was an in-between day.  We made it until the end of dinner before the tears came and that was good enough.

Monday, November 25, 2013

Laughing at Ourselves

Mom and Lyn are here much to our delight.

Over dinner last night, one of my children expressed a wish to not have a particular life challenge.  Mom and I have both had to manage conversations like this and can take them in stride.  I considered my child for a moment before motioning towards each of us seated at the table and saying "I understand.  However, you just got the luck of the genetic draw and each one of us faces our own challenges." My child thought about what I was saying while looking at Aunt Lyn.  A look of understanding and acceptance crossed kiddo's face before the head was nodded.  I waited again and followed with "Take me for example.  I am challenged with this radiant beauty." Kiddo burst out laughing and Mom choked on her bite.  "Sometimes, it helps it you can laugh at yourself."

Lyn, in all earnestness, turned to me and said "You can laugh at yourself.  Just don't do it in a mirror. I tried it and it does not work.  No mmmmmm!"

After dinner wii bowling

She is full of wisdom and the table was ringed in laughter.

Friday, November 22, 2013

We will be waiting

A winter storm is hitting New Mexico.  The forecast indicates there is a break in the weather just in time for Mom and Lyn to fly out here.  As long as their plane can get out, they will make it.  Even if their plane is delayed, we will be here waiting for them.

Thursday, November 21, 2013

Travel Precautions

Traveling with dementia is possible.  Precautions and preparations have to be put into place to smooth the way.  Bumps along the way should be the expectation.

In preparation for this trip, we've taken the following steps to provide Lyn with the supports she needs:

  • Rented an oxygen condenser so that she has the nightly breathing supports she needs.
  • Booked airline tickets using a reservation specialist with the airline so that the airline could be alerted to Lyn's dementia.  This allowed seats to be assigned as close to the front of the plane which will ease her anxiety and facilitate getting on and off the plane.
  • Made reservations that provided direct flights between her home and mine.  The slightly higher cost is worth avoiding the confusion a layover would introduce.
  • Requested pre-boarding access so she can be seated before the confusion of the regular boarding procedures are initiated.
  • Requested the use of a wheel chair at each airport to get Lyn from door to door.  This will allow her to sit back and relax instead of feeling anxiety over which way to go to get to the gate or getting confused or fatigued on the way to a gate.
  • Secured a TSA approved carrier which will keep her meds properly chilled and handily available in Mom's carry-on.  This will allow Mom to provide Lyn with an anti-anxiety med if she needs it which we anticipate she will.
  • Packed copies of her prescriptions and medical information.  These are needed in case TSA questions the meds in the travel carrier.
  • Put a plan into place for how we will interact with Lyn when she gets to baggage claim.  This is the first point at our airport where we can engage with Mom and Lyn after they get off their plane.  My husband and elder child will stay with Mom at baggage claim to collect their bags.  I will take Lyn and my younger child straight to the car where we will wait for the rest of our party.  This way, Lyn will be in a quiet, calm environment.  If she wants to cry or close her eyes and rest her head, she can.  
  • Provided her with a medical alert bracelet.  OK, this last one was done long before this trip.  However, I wanted to include it in the list because, if for any reason something were to happen, the information on the bracelet will be immediately available and used by anyone who helps Lyn.
Most importantly, Lyn is not traveling alone.  She's with an person who is experienced with how to interact with her.

Hopefully, our planning will pay off and the travel days will be successful.

Additional information:
Traveling with Dementia - Elder Care Team

Wednesday, November 20, 2013

Sun in Her Eyes

The day this was taken may have been brisk, but the sun, in typical New Mexico fashion, was bright and in her eyes.  When she comes to VA in a couple of days, she may find she needs her sunglasses less because we tend to be a bit more overcast.

The oxygen condenser arrived yesterday.  One more thing is now in place to make her visit as easy on her as possible.  It may be a challenge for us, but we want her to feel as safe and comfortable as possible.  We expect there to be tears and emotional outbursts.  They're the name of the game right now.  We also know to not take it personally.  It is the disease talking, trying to control, interrupting and being demanding.  We can deal with that.  What's a week with an Alzheimer's patient when you've dealt with traumatized children coming into foster care?

We've got this covered!

Tuesday, November 19, 2013

Suspicious of My Cooking

Over dinner last night, Mom reminded Lyn that she could make a suggestion for what we should have for dinner the night they arrive.

Lyn asked "What does she know how to cook?"
"Just about anything we could think of."  Mom replied.

I realize it has been a while since she's seen me cook and that her Alzheimer's has probably erased what memories of my cooking she may have had.  However, I find this little exchange typical of my sister and highly amusing.  She's suspicious of my cooking and is probably recalling the days, two decades ago, when she had every reason to be suspicious.

Mom is suggesting that their first meal here be something simple.  I will do my best to comply and quietly chuckle to myself as I do so.

Monday, November 18, 2013


We are in the countdown of days until Mom and Lyn brave travel to come visit us.  Lyn is excited but getting nervous.

She's started to worry about where they will park the car.  Mom needed to go by the airport this weekend and showed Lyn where they will park.  Mom will have to repeat her plans to Lyn each day.

Lyn is also worried about when they will pack their bags.  She does not want Mom to pack her carry-on for her.  Lyn wants to pack it herself.  Mom assured Lyn that only Lyn will pack her carry-on.  Mom will respect her request.

I have received confirmation that the oxygen condenser is en route and will arrive on Tuesday.

The room where Lyn will sleep was cleaned this weekend and will be cleaned again just before they arrive. Once I give it a second cleaning, I'll close up the room to keep the cats out.  This will hopefully reduce the allergens for Lyn and make it easier for her to sleep.  I've already picked out a quilt for her to use and taken it to the dry cleaners so that it is nice and clean for her.

When I spoke with her yesterday, Lyn started trying to take control by telling us when we needed to go shopping and what we should do when they arrive in Virginia.  I quickly countered that they will have spent a couple of hours on a plane and had a busy day.  So, I suggested, that we just come to my home and get comfortable for the evening.  She didn't look pleased.  I've offered to fix anything she wants for dinner if she can think of it.  She seems to have accepted this alternate plan for the day they arrive.

We both have a busy schedule for the week before their visit.  However, we're all excited that we'll be seeing each other soon.

Thursday, November 14, 2013


Mom and Lyn recently winterized their home.  The swamp cooler has been shut down for the year and the heat turned on.  Their winter clothes were brought out and the summer clothes put away.  The weather has already turned cold though they may have a warm day here or there.  Mom is already sending me the snow accumulation reports from different locations around the state.

Mom had not yet switched out the bedding on my sister's bed when Lyn remembered it and asked for it.  While Lyn was out, Mom switched out the bedding without supervision.  Lyn started using it that night.

I am not sure how she does it, but I suspect she could sleep in a sauna with a blanket.  The oxygen condenser produces a lot of heat.  Even with that next to her, she sleeps under multiple blankets, a comforter and has her electic blanket on all night.  She also has on flannel pajamas and socks.  No, she does not sweat away the night.

When she comes to visit this month, she will be sleeping in the coolest room of the house.  However, she will have the oxygen condenser warming up the room.  We have no electric blanket, but there are a ton of blankets that we can pile on her.  If she needs wool socks, we will pass some to her.  She will make it though I expect a comment or two if she thinks we should have electric blankets.  If she does, I will tell her we don't have them because my husband and kids can barely keep a regular blanket on all night.  They woul be uncomfortable to sleep in the heat she prefers.  If I attribute it to them, she will accept that answer.

Grandma was the same way.

Wednesday, November 13, 2013

Tuesday, November 12, 2013

Steak and Chinese Food

Last week, Mom was planning to grill some steak for dinner.  When she told this to Lyn who had asked what was for dinner, Lyn quickly informed her "I'm tired of having to eat steak all the time."  They had eaten chicken for several days leading up to this moment.

Mom quickly apologized because she didn't know that Lyn was tired of steak.  She asked what Lyn wanted and Lyn initially said "I don't know."  This is her typical response these days.  However, Mom prompted her again by saying, "If you can think of it, I will fix it."  Lyn thought for a moment and suggested meatloaf.

Mom accepted the suggestion without laughing.  The last time she had made meatloaf, Lyn had told her how much she disliked meatloaf.  (She also now dislikes apple juice and chocolate milk too.)  Mom didn't remind Lyn of her dislike for meatloaf and quickly put one together.

Knowing Lyn's lack of food consistency these days as well as her susceptibility, we've decided to use the power of suggestion on her.  She's never been willing to try Chinese food and we love it.  We have asked her if she would like to get lunch from a little restaurant by my house which serves "Chicken and noodles."  She asked what was in the dish and I described the components of chicken lo mien to her.  She decided that sounded like a good option.  We told her the restaurant served Chinese food too but that she could stick with the chicken and noodles if that was what she wanted.  When asked what else they had, I described a couple of other items by their components and not their names.  Doing it this way met with her approval.

We have used this approach before with success.  I made braised ox tails the last time they were here and we just told her it was beef.  Before serving it to her, I removed the meat from the bone.  She was happy.

We'll see if it works.  If not, we've always got a Plan B in place.

Monday, November 11, 2013

Resting Stick

Several months ago, my former step-father offered to make Lyn a walking stick when he learned of her stability problems.  It was a generous offer of his time and skills.  He asked Lyn if she wanted any colors or special designs on her stick so that he could personalize it to her preferences.  He let her know that he had a couple of others scheduled ahead of hers.  She was very excited at the offer.

The work is done and she has the stick.  She has had it for some weeks now.  However, I have yet to see it.  I have asked her to show it to me.  Each time, she acts as if she doesn't hear me.  She doesn't refuse.  She just does not respond to my request and changes the topic.  I find this very amusing.

On Saturday, I called Mom while Lyn was out with her respite provider.  Currently, the only way for Mom to have an unsupervised conversation is for it to happen when Lyn is at day hab, with respite or asleep.  During the call, Mom told me that in their recent day trip up to Taos with their lovely neighbor, Mom had Lyn bring her walking stick.

When they stopped to visit a historic home in Taos, Mom reminded Lyn to bring her walking stick from the car and use it.  She pointed out that Lyn had practiced using it and could do it just like their lovely neighbor uses her cane.  "I know.  I know!"   Lyn stood there clutching the stick to her chest with both hands as though she were afraid to drop it.  With that, they started to move from the parking lot to the entrance.

Mom quickly realized that Lyn had positioned herself in the shadowing spot that lets her reach out to clasp Mom's shoulder anytime she needs additional stability.  She also realized that Lyn was not going to use the walking stick if she was keeping it clutched to her.  Mom stepped out of Lyn's reach and maintained a distance the rest of the time.  Lyn, however, continued to refuse to use it even though she was actually making herself more unstable by keeping her arms pinched in tight.

When they got back to the car, Mom asked why Lyn carried but didn't use the stick.  " I don't want to get it dirty.". Mom pointed out that it is ok for the stick to get dirty and that it will easily clean.  Lyn rejects this notion.

The stick has become a cherished possession of Lyn's.  She has decided the best place to store it is laid out on the guest bed.  For now, it is the resting stick.  We shall see if we can convince her to put it to its intended use.

Friday, November 8, 2013

Bowling Distractions

Lys's respite provider was unavailable yesterday.  Mom told Lyn that was no problem.  She would take Lyn to Special Olympics bowling.  Lyn refused to go.

When asked why, Lyn explained that she does not like bowling with one of the male bowlers.  His girlfriend shares the lane with Lyn.  He bowls in the next lane.  During the course of practice, the couple interacts with each other and end up hugging, tickling and laughing.  This is a big distraction to Lyn and makes her angry.

This has only been going on for a few month with this couple.  The girls have been bowling together for years, however.  None of the girls want to change lane partners either.  When the distraction has been raised to the coaches, the reaction is that the bowling is "just for fun" and they will not intervene.

Lyn no longer wants to deal with the boyfriend as is willing to skip bowling as a result.  She will tell this to Mom.  We don't know if she will tell this to her respite provider next Thursday.  Mom hesitates from suggesting that Lyn stop going because Lyn will stop completely.  If she stops, which we actually anticipate will happen soon, she will miss out on a stimulating activity.

Thursday, November 7, 2013

Corn and the Cob

For as long as I can remember, Mom has blanched and frozen ears of corn each Summer.  This way, there is sweet corn corn on the cob available even in the dark months of Winter.

Last week, Mom and Lyn decided they wanted some corn on the cob for dinner.  Mom cooked some up and placed an ear of corn on each of their plates.  Lyn picked hers up and took a big bite.  She got a very worried look on her face and started spitting out her mouthful.  "There is something wrong with my corn!". She was very upset.  It was fortunate that she had spit it out because she had actually bitten through the cob.  There were thick, woody chunks of cob attached to the kernels which she could not safely chew much less digest.  

Mom apologized for giving Lyn "a bad ear of corn" and quickly removed it from her plate.  The corn remaining in freezer has been passed to an uncle so that it does not go to waste.  Mom and I are concerned that Lyn no longer understand how to eat corn on the cob safely.  

Wednesday, November 6, 2013

Oxygen to Go

With Mom and Lyn planning a trip out here, we have had to figure out what to do about Lyn's need for oxygen at night.  I live close to sea level.  She lives above a mile in elevation.  The oxygen here is more dense than it is there.  However, it is not enough to compensate for her needs.

Lyn's oxygen condensor is a home model.  This means it is bigger than a bread box and not considered a travel or portable model.  It is on wheels and does not have a strap for easy carrying.  There are portable models which a person can carry with them when they need the oxygen condenser 24/7.  Lyn only needs hers when she sleeps.  Because of the size of her personal unit, it doesn't make any sense for her to have to worry about bringing it with her.  Fortunately, there are ways to rent a portable or home unit for periods of travel.

I looked around and found a couple of local companies which provide oxygen condensers and inquired into a week-long rental.  The first company said they would need to get manager approval and would call me back.  They not only didn't return my call, they didn't return my second call.  The second company never presented an opportunity to speak with someone.  I gave up after sitting on hold for nearly 45 minutes.  I wondered if their lines really were flooded people needing respiratory support or if they didn't have enough employees to answer their lines in a reasonable amount of time.

I broadened my search and looked beyond local providers.  In short order, I was able to secure a rental which will be shipped out prior to their arrival.  The representative was polite and efficient and the entire transaction took less than an hour including faxing a copy of Lyn's prescription for an oxygen condenser.  The representative even kindly asked how often Lyn travels because the rental for one week is about half the price of a new machine purchase.  I thanked him for the tip, acknowledged I was aware of the costs but pointed out that this is most likely her last trip and one-time need.

So, if you ever find yourself needing an oxygen condenser for travel, know that they can be found with a little time searching the net.

Tuesday, November 5, 2013

Names are Challenging

Names are becoming more of a challenge for Lyn.  She is working hard to get them right, but she's now starting to struggle with the names of my children.  I am not correcting her or completing the word for her because I don't want to call attention to the stumble and make her feel poorly.  However, I notice it and know it means that the damage to her brain is growing.  

When she sees my kids on the computer, she's either able to recall their names or covers with conversational tricks like "Hi sweetie!" Sometimes, she forgoes the greeting altogether and just starts with "How are you?"

When she doesn't see them, that's when she stumbles if she tries to name them individually.  Since she will repeat questions asking what they're doing, she's now stumbling over the names repeatedly.  

My kids either haven't picked up on the challenge Lyn is having with their names or they have chosen to not say anything thing.  Knowing my children, it is that they haven't noticed yet.  When they do, I'm prepared to discuss this with them.  They know Aunt Lyn has a disease of the brain and that it is making permanent changes.  They know there is no cure and that she'll die at a young age as a result.  This will just be another part of that on-going conversation.

Monday, November 4, 2013

Conversations with the Physician

Mom spoke with Lyn's physician last week.  They discussed the emotional outburst and the pending travel.

The physician was glad to hear that Mom is taking a realistic outlook when saying "When the next event occurs, we will need to " add in medication to stabilize Lyn's mood.  Mom and the physician are in agreement that not only will Lyn need a mood stabilizer soon, but that more outbursts are going to happen.  I think that Mom's interaction with the support group has been a good source of information and insight from other caregivers who have already been through the stage where Lyn is at today.

When the conversation turned to their pending trip here for Thanksgiving, Mom discussed the fact that it is going to be challenging.  Lyn will be out of her home environment and will have more stimuli than normal.  Of particular challenge will be navigating the airports.  Both my brother and Mom's lovely neighbor have urged her to arrange for Lyn to have access to a wheelchair and steward for assistance in getting from door to plane and back.  The logic is that Lyn's unstable and while the distances involved are not too great, the confusion of the people around them, the need to go up ramps, down escalators, through long halls, the train at the Virginia airport and the short time available to board or disembark have all are a factor of getting Lyn through without a melt-down.  With the wheelchair assistance, she'll be able to sit and talk (or cry if necessary) while constantly making progress toward the destination.  The physician said "Listen to them.  It is the exact thing I was going to suggest as well."  Mom has made the arrangements.

We are pretty sure this is going to be Lyn's last trip out.  We previously had ruled out such a trip but have realized that if she's still able to, even with the challenges, it is worth the effort.

Friday, November 1, 2013

Competition Again

On Sunday, Lyn had competition with Special Olympics for bowling again.  Let's let her tell you of her results.

That's a gold earned with a score of 149.  She may be increasingly unsteady, but she did a fabulous job!

Thursday, October 31, 2013

Passing Out Candy is Serious Business

When Lyn got too old to go trick-or-treating, she turned to handing out candy when neighborhood kids came to the door on Halloween.  Lyn loves the social nature of Halloween.  You get to visit people and they give you candy; what's not to like?

She hands out candy to this day.  She takes the responsibility very seriously and used to correct me when she thought I was doing it wrong.  We differ in our approaches, you see.  She'll pick out a couple of pieces for each person, making sure they don't get two of the same thing while guaranteeing that they only receive 3 pieces.  I reach into the bowl and grab a handful to just drop in the waiting child's bag.  Lyn's been known to remind children to use their manners and say "Thank you."  (That one gets me giggling every time.)  I am fairly quick with my "There you go. NEXT!" approach.

She will continue to greet kids at the door each Halloween for as long as she's able.  I suspect that one day, I'll become that neighbor who takes the self-service approach.  I'll leave a bowl on the step with a note.  Mine won't say "Please take one."  It will say "Just leave the bowl behind."  Lyn would tell me of the importance of greeting each trick-or-treater if she knew I contemplated this approach.

Let's not tell her.

Wednesday, October 30, 2013

Is This The Start?

Last week, when Mom arrived to pick Lyn up from day hab, the staff asked to speak to Mom in the office without Lyn.  They had to advise Mom that a report was necessary due to a significant "change in behavior."  Lyn got aggressive with another client.  

The other client doesn't like to speak and the team works to encourage him to use his words.  They had just succeeded in getting him to sing into a toy microphone.  Afterwards, everyone laughed and clapped for him and he began to sing again.  The staff stepped into the other room and Lyn took that moment to make her move.  She jumped up, got into his face and screamed "Shut up!  Shut up now!"  He kept singing and the staff came at a run.  Lyn stormed off to the restroom in tears.  

We don't know if she was angry that another person was the center of attention.  We don't know if something else caused her to feel confusion or threatened.  However, the staff was right to intervene immediately to protect the other client.  While Lyn did not strike him, her outburst was out of character. Normally, she would have been unhappy and then complained about it to Mom on the way home.

Lyn's internal governor is failing and seems to be failing quickly.  This incident has been documented by day hab and is being included in the reports to Lyn's case managers.  It will also be documented with her physician.  Mom and I are actively discussing the need to medicate Lyn.  It is looking more and more like mood stabilizers are in need.  Her physician disagreed the last time they met.  However, this incident or another like it before their next quarterly appointment may be the tipping point.

Tuesday, October 29, 2013

Aggression in Alzheimer's

Aggression can arise in the middle stages of Alzheimer's Disease.  It can be abusive language or even take the form of physical violence.  It can happen suddenly and seem unprovoked.  It can be frightening to the care provider as much as it it is to the Alzheimer's patient.

First, a reminder:  This is the disease talking.  If the behavior seems out of character for the Alzheimer's patient; it is.  Just remember that their brain is being actively damaged and that damage will manifest itself in unexpected ways.  

Second, a caution:  Seek help if an Alzheimer's patient you are with or caring for becomes violent.  No care provider needs to just accept a beating from an Alzheimer's patient just because it is the disease talking.  The care provider deserves safety and an environment without fear.  Honestly, it is OK to call the police if an Alzheimer's patient hits you.

The Alzheimer's patient that becomes aggressive or violent needs to be evaluated by professionals experienced with Alzheimer's care.  The patient's aggression may be a result of unmitigated physical pain such as from a urinary tract infection.  The aggression may be an indicator that the person needs mood stabilizing medications to help them feel calmer or safer.  Even if a specific cause is not found, steps can be taken to make the patient more at ease and that helps increase safety for the care provider.

Additional Information:

Friday, October 25, 2013

Out Past Curfew

I called Mom's to check on them tonight and there was no answer.  The phone went to voicemail.

This is a little out of the norm, but not too unusual.  It is Thursday which means that Mom may have had to fill in for the respite provider and take Lyn bowling.  This in turn means that Lyn probably convinced Mom that they had to go out to dinner afterwards.  Somewhere in the back of my memory, I think I remember Mom saying their respite provider was not available tonight.

When nights like this happen, I leave a message that I'm checking up on them while they're galavanting about town.  I could call her cell, but I don't like to disturb them while they're out.  When Mom calls me back, she'll laughingly accuse me of keeping tabs on her.  Mom doesn't need to account for her time to me.  She may have to account for Lyn's time as well as her own to the State, but not me.  Lyn does that for me since she will now tell you anything she remembers.  (No skeletons closeted here.)

Our conversations are about routine things like what happened to them today or what is going on with my children.  They provide a lifeline and a sense of normalcy when each day is an adjustment to a new normal.

Thursday, October 24, 2013

Crunchy or Creamy

It has been known for at least 20 years that Alzheimer's Disease damages your ability to smell early on in the course of the disease.  Ten years ago, a list of 10 scents were identified as significant indicators that a person would end up with Alzheimer's if the person was unable to smell them.  This month, a new test has been made known to the public in which peanut butter helps to confirm an Alzheimer's diagnosis.

Peanut butter was chosen because it is a pure odorant meaning that it triggers just the olfactory bulb and not other closely associated nerves.  It is also cheap, easily identified and readily available.  Peanut butter has a unique scent while others may be misidentified as a related scent.  For example, you might think a lemon was a lime.

The test checks to see if a person can smell the peanut butter at the same distance through their left nostril as they can through their right nostril.  That's it.  Pretty simple.  The findings indicate that if you cannot smell the peanut butter through your left nostril or have to be much closer to it than when you smell it with your right nostril, you may have Alzheimer's.  If you can smell it more easily with your left than your right or if you smell it equally well in both, then you may not need to worry about Alzheimer's.  You may have something else going on; just not Alzheimer's.

I've been reading about the test and all the excitement over it for a week now and, against the standard Mythbuster type warnings of "Do not try what you're about to see at home", I tried it.  (Did you honestly expect anything different from me?  I've got Theo Gray's Mad Science: Experiments You Can Do at Home - But Probably Shouldn't sitting on my dining table right now, after all.)

I'm happy to report that as of this writing, I can smell peanut butter a mile a way.  Take a lid off and the smell of it fills a room for me.  Then again, I'm not the target demographic for the test and just did it out of curiosity.  Before you ask... No.  I'm not planning to ask Lyn to participate in the test.  She'll well beyond the early stages of Alzheimer's and I'm not sure she can understand what I would be asking of her.

Wednesday, October 23, 2013

A Typical Ballooning Morning

What do you do on a beautiful morning when you're out to enjoy the balloons?

You hug a giraffe, of course!

Tuesday, October 22, 2013

Winding Down

Lyn is winding down and turning in on herself.

You can see the vacancy a bit in her eyes in this picture.  This is part of the progression of the early on-set Alzheimer's.

She cries nearly daily.  Even speaking with me on the phone will trigger tears.  She still attempts puzzles.  However, she now works puzzles with few, large format pieces.  She actually ate chicken and dumplings recently, having forgotten she didn't like it.

Picking out clothing requires assistance nearly daily now.  She is unable to make a decision about what to wear.  Because she has so many shirts, Mom has decided to move half to the other bedroom.  The thought is that a smaller selection may be easier on her.  It hasn't made a difference and Lyn hasn't missed any of the shirts she doesn't see.  She is currently cycling through a couple of favorite shirts and has pretty much forgotten the rest exist.

If you ask her what she did today, you will most likely get "I don't remember.  I'm sorry." as the response.  If she doesn't remember, it means the day went smoothly and nothing upset her significantly. Negative memories are easier to remember and, as a result, something that is upsetting to her will be fretted over for many hours.

Lyn has completely discontinued Friday evenings out with her respite provider.  She states that "It is just too much."  So, respite is now down to bowling on Thursday afternoons and 4 hours during the middle of the day on Saturdays.  Even this is leaving her exhausted.

On Sunday, when we spoke, they talked about visiting Tim's Place for a late breakfast after getting their flu vaccines.  Lyn started talking about not wanting a big meal because she's just not hungry any more. Then both Mom and I about had our eyes pop when Lyn suggested that they just skip going out to eat completely.  Lyn wrapped up by saying she'll decide that day.

As her brain changes, I think she's disconnecting from her environment.  There will come a time when she no longer engages at all.

Monday, October 21, 2013

An Unexpected Hiccup

I apologize for the interruption in blogging last week.

I had a business trip to Chicago.  While I took my tablet with me to blog on the road, I found my self too tired at the end of the last two days of the trip to put a single coherent sentence together.  I had spent those days in client interviews as part of a larger  requirements elicitation process.  It doesn't sound too bad when I say it that way.  The reality is that we were sitting in a conference room without windows from 7:30 am until the last client left at nearly 6 pm with a short break for lunch.  During that time, we asked questions about the client's business processes and captured as much of what they explained as possible.  After dinner and prep for the next day, my brain was drained.  Blogging suddenly felt BIG and daunting.  As a result, I didn't post for Thursday or Friday.

Blogging is a hobby for me.  It is a way to tell Lyn's story as well as share information about Alzheimer's with Mom and with you, dear readers.  Normally, I prefer to have a couple of posts queued up when I have to travel to minimize the impact on the blog.  This trip didn't see me so organized.  While blogging is very important to me, it is not my number one priority.    Sometimes, crawling into bed and sleeping rates higher in my hierarchy of needs.

So, let's just agree that this will be the last time I apologize for missing a post or two.  I want to give you  posts with thought and care behind them.  I also want to maintain some blog/life balance.  If I miss a post, I am giving myself permission to not feel guilty or like I've let you down.  You have never made me feel that way so there's no reason for me to inflict that upon myself.

Thank you for your patience and understanding.

Wednesday, October 16, 2013

Daily Journal

One of the tools Lyn's speech therapist is using with Lyn is a daily Journal.  Lyn's task each day is to write down what she did.  She does not have to write a sentence; much less a paragraph.  She is just to write down the name of the place or activity.  Today, for example, she would write "day hab."  It may come out as "DAHYB."

Each page has a set of pictograms to represent her different activities.  Each image is followed by the title.  She has been struggling to look at the bottom of the page, identify the word she wants and copy it to the line where she needs to log her activity.  This task was devised for her in recognition of her nearly lifelong practice of copying words that she wanted to write.  Mom or a teacher could write down a special greeting that Lyn dictated for her to copy when she made a birthday or get well card. Today, she struggles to even identify the letters or keep her place in the word.  She struggles to remember what she did from one day to the next more often.

Her therapist thinks it may be time to break this activity down more and make it easier on Lyn.  As a result, she may be switching to a board with pictures on Velcro.  It may be easier for her to select the picture without the added confusion of writing the words.  The goal is to try to engage her at a level she finds challenging but not so frustrating that she gives up. 

Tuesday, October 15, 2013

Competition Quandry

State games are in two weeks for bowling withnSpecial Olympics.  Lyn will, of course, compete.

Mom reminded me the other day that Lyn has been competing in Special Olympics since she was eight years old.  Sometimes, I think she was six; but that is because I am remembering that time from my perspective and I was six.  Lyn is 42 and has competed in one sport or another for 34 years.

She has met so many friends through Special Olympics.  They have been fellow athletes, coaches and volunteers.  They have really enriched her life and helped her achieve more than ever expected.  When you don't put limitations on a person, you allow them the room to grow to their potential.

As a parent, that is sometimes a hard concept to remember and practice, especially if you feel the need to protect a person or are faced with recognizing very real limitations.  On the news last night, there was a story of a young man with Muscular Dystrophy who finished the Chicago Marathon 17 hours after he started.  He set a goal for himself and achieved it with a host of people cheering him on.

I look at stories like that and find them deeply inspirational.  However... You knew there was a "however", right?  Lyn's reality is ever changing.  She is increasingly unstable and her vision is fading.  The Alzheimer's is winning bit by bit and the competition is over stimulating and confusing her.  Perhaps, it is time for Lyn to retire from Special Olympics.  Perhaps, it is time to transition to bowling just for fun.

Monday, October 14, 2013

Blue Ribbon

Lyn had Regional Special Olympics bowling very early on Sunday morning.  She did an excellent job!

The highest score Mom saw during the competition was a 201.

Lyn's bowling was unsteady and her first game was a score of 100.  The second score of the day was 159.  The third score was a 97.  The third game resulted in everyone's scores dropping quite a bit because they're used to only playing two games in a day.  The second score earned her a blue ribbon for First place for her lane.  

During the second game, Lyn got a strike and everyone clapped for her.  She spun around and yelled "I LOVE this game!"  Parents were doubled over laughing as a result.  In a couple of weeks, the State games will be held and Lyn's ready to go!

Friday, October 11, 2013

A Cautious Hope

Monthly, I read articles about research findings which may lead to a treatment for Alzheimer's disease.  Could even 25% of the research lead to a treatment?  It is highly unlikely.  However, the research is necessary because we won't know the right research path until we find a successful treatment.

This week, the results of a study were announced.  The study shows, for the first time, that the progress of a degenerative neurological disease was halted in a set of mice.  This fact alone makes this study of particular note.  The approach was to keep the brain cells producing proteins instead of letting them shut down in an attempt to prevent the spread of a virus.  By continuing production, the cells did not starve themselves to death from being shut down for too long.  I am grossly oversimplifying my paraphrase but the article linked above does good job of explaining.

Does this mean that a cure is around the corner?  No.  It means that one disease was kept from progressing in the mice.  It also means that scientists have one more piece of an extremely complex puzzle and a cautious hope that it will be a key to finding a treatment effective on humans.

Thursday, October 10, 2013


For a variety of reasons, my family and I are not traveling to my in-laws for Thanksgiving this year.  It happens every few years.  Knowinng we will be in town and I have available vacation days, I asked  Mom if she and Lyn would like to come join us for Thanksgiving.  

We discussed the challenges of traveling with Lyn, of her potential for tears and confusion, of going through security and working with the TSA agents to keep things calm for Lyn.  Lyn is going to cry no matter what happens.  Crying is a near daily event in her own home now so crying here is really no different.  She is going to experience confusion as she does more now in her own environment.  Going through security will require patience and a running dialogue of what she needs to anticipate next.  Documentation can be made available to TSA if they question Mom's statement of  "She has dementia."  After all this, I said that if it was too much, tell me and will fly out to spend a week with them.  Mom said "We are coming."

They have purchased their tickets.  I will be arranging a portable oxygen condenser to be on-hand for the week they will spend with us.  I have scheduled to have the whole week off and the three of us will spend our days together until the kids get out of school for the holiday weekend.  We'll tackle our Christmas shopping while the kids are not with us.  I will cook and we will stuff ourselves.  It will be a low key, quiet and relaxing week. 

I recognize that it is a big effort for them to travel these days.  We all know it will be challenging for Lyn.  However, they want to do this and we want them here.  

Lyn is excited at the thought of coming to visit us for the first time since her diagnosis.  I think Mom is too.  I know I am!

Wednesday, October 9, 2013


Last weekend, Lyn was taken up to Taos for a quick day trip.  They left early and got home early.  Mom made sure to stick to the highway for their drive and not take a back road.  The drive was done this way to reduce anxiety for Lyn.

It worked.  They had a nice day out.

Tuesday, October 8, 2013

Balloons Everywhere

The Albuquerque International Balloon Fiesta has started which means there are hundreds of balloons in the air each morning that conditions are favorable.  Conditions are favorable for ballooning most days during the fiesta.  Albuquerque has the highest concentration of hot air balloons in the world and there are several up nearly every morning through out the year.

Lyn has seen the balloons nearly her whole life.  She was between 2 and 3 years old when our parents returned to New Mexico after several years away due to military duty stations.  Other than the October of 1990 when we lived in Montana, Lyn has spent the rest of her life in Albuquerque.  You would think that seeing hot air balloons would be passé after seeing so many in your life.  You would be wrong.

The balloons are a daily part of Lyn's routine.  She checks for them each morning once she is up and moving.  She will ask Mom if any were up if she sleeps late and she misses them.  When it is fiesta, she gets very excited over it.  Mom writes:

      The balloon fiesta's in full gear and about 520 hot air balloons got up. Didn't matter which way
      you looked you saw balloons. Think of brightly colored Christmas ornaments dancing in the sky.
      I was afraid she would get a whiplash trying to see them all.

      There were quite a few flying in our part of town. She kept turning, trying to see them all and got
      so excited she could hardly speak. Of course, each one was her favorite. It was wonderful. Seen
      thru the eyes of "a child" makes it more fun! She kept turning, pointing and just laughing.

      By the time we got to day-hab she'd calmed down.
      "Boy, wait till I tell everyone that I'm lucky and saw all the balloons."

To give you a sense of what Lyn was so excited over, here is a video a friend of mine took during yesterday's launch of the Darth Vader balloon.  He was a guest in the gondola.  The video lets you see just a small portion of the launch field and the growing number of balloons in the air spreading out over the city.  You might also spot Boba Fett and a Trooper in the crowd.

Lyn loves the shapes and colors of all the balloons.  It never gets old for her.  Honestly, it never gets old for us, either.

Monday, October 7, 2013

Forgetting Herself

Think about your preferences.

Think about how you like your favorite meal.  Is it a sandwich, soup or pasta?  Is it curry?  Is your favorite meal a burger made a certain way?  What about what you like to drink?  Do you prefer tea, water, juice or coffee?  Do you like milk or an alcoholic beverage?

Think about how you tend to your daily hygiene tasks.  Do you bathe at night to relax before bed?  Do you shower in the morning to wake up and get your day going?  Do you brush your teeth before you dress in the morning or after?

Do you even think about what you like or how you prefer to execute your day?  Probably not.  I know I hardly have to think twice about what I like.  If I have tasted something before, I am pretty sure of my like or dislike for it.  If I like something, I don't suddenly dislike it one day or forget that I liked it a week or month ago.  Then again, I don't have Alzheimer's.

Alzheimer's does make you forget these things.  You forget lifetime patterns of behavior or long entrenched preferences.  Lyn is forgetting.  She has forgotten that she liked apple juice and now claims that she never liked chocolate milk.  She has forgotten how she preferred her hamburger.  She also now states she has never liked taking a bath and has always preferred to shower.

She is forgetting herself.

Friday, October 4, 2013

Pseudobulbar Affect

I was sitting in the lobby of my ophthalmologist's office earlier this week waiting to be called back for my appointment.  As is my habit when in a waiting room, I was crocheting while paying attention to the world around me.  There was a television on in the room and I found myself watching a commercial for a prescription medication which I had never seen before.  The medication is to treat a condition I had never heard of, either.

The commercial caught my attention because of the symptoms and, if I'm writing about it here, it applies to dementia.  The condition is called Pseudobulbar Affect.  The Pseudobulbar Affect is a neurologic disorder secondary to dementia or brain trauma which leads to involuntary crying or laughing.   In May, I wrote about emotional contagion in which a dementia patient becomes more empathetic to others, mirroring their emotions.  Pseudobulbar Affect is not emotional contagion.

Lyn has not been diagnosed with it.  However, we've seen the uncontrolled crying and laughter in her.  Nikka can bring her to tears through laughter.  We did the same thing when we were visiting in August.  Lyn was anxious and we got her to laughing to avoid the tears.  She cries nearly daily.  When she reached for me saying "Hold still, I think you have a bee," my swatting her hand away (I am allergic to bees) caused instant, angry tears.

Mom and Lyn's physician have spoken of the increasing emotional outbursts.  They agree that she's going to need medication soon.  However, the conversations have not brought up this particular condition and have instead spoken in general terms of the emotionality of dementia patients.

I believe we may have a name for that emotionality.

Thursday, October 3, 2013


Dante wrote in his poem, Divine Comedy, that the eighth circle of Hell, Malebolge, is reserved for those who commit fraud.  Fraud that is punished in Malebolge includes many different kinds of deceit including extortion, hypocrisy and lies.  There is so much fraud to punish that there are actually 10 divisions to this particular circle of Hell.  The 10th division is where the falsifiers are punished by being afflicted with diseases such as rashes, dropsy, leprosy and consumption.  Mom, it appears, is on her way down to Malebolge.

She writes, "I think there are different levels of Hell and I'm going way down with the liars."

Yes, Mom.  According to Dante, you may be.  But, I get ahead of myself.  Mom is actively telling Lyn lies.  Are they for personal gain?  Not if keeping a peaceful household and a calm Lyn is personal gain. Mom writes of her misdeeds,

     "Yesterday Lyn asked if she has Alzheimer's.
     I said "Yes" and asked why.  

     She said on TV they had an old grandma and she has it.  The people were talking but the grandma didn't understand and they didn't know what to do.  

     I said I was sorry I hadn't seen that.  

     Lyn informed me that I don't have to see everything.  

     I said the grandma might have a bad case of Alzheimer's.  

     To which Lyn responded with "I don't have it and I don't have a diagnosis because I'm just me."  

     I agreed that she is just Lyn.  In the meet & greet she said that again and I agreed she is just Lyn.  I said I try to be careful not to use the words "Alzheimer's" or "diagnosis", if possible.  We all agree that sometimes Lyn just needs a little bit of help.  

     Then shortly after turning on TV, the ad she saw yesterday was on.  She said to look at the old grandma.  

     I, once again, lied to her.  I said that sometimes when old people have Alzheimer's it is different than when young people have it.  I pointed out how the family was talking about the grandma wandering and getting lost.  I said that since Lyn is young, her brain is healthier and we aren't worried about her wandering.  It was a commercial for an adult care program.  

     She said when she's older she's not going to have the same Alzheimer's that old grandma has.  

     I told her it was a good idea not to have it.

     She is becoming sensitive to even hearing the word Alzheimer's."

These are the lies Mom tells.  If there is a hell and if Malebolge is in Mom's travel schedule, perhaps she'll just be afflicted with a rash as punishment for her lies.  I think consumption may be a bit much.

Additional Information:
Psychiatrists and Nurses Admit Lying to Dementia Patients