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.