Wednesday, December 30, 2015

15 Reasons

Yesterday's post prompted Mom to challenge me to give her 15 reasons she should consider adding texting to her skill set.  She indicated she didn't like the concept of texting because it interferes with people socializing with each other and she hates the poor spelling and grammar she's seen online.  So... Here's my attempt to answer her challenge.

Reasons Mom should consider texting.

1. Speed - she could quickly text me to bring something to my attention.  Perhaps she wants me to distract Lyn with a phone call.  A text is a quick way to get the request to me without having to go through the effort to call or email me.

2. Active vs. Passive Communication - Texting is an active form of communication.  Email is a passive form of communication.  While both engage the sender actively, the recipient is not directly engaged with the email until or unless the recipient checks for a recently received email.  Email is useful, but I can ignore email during evenings and weekends.

3. Discretion - Sitting down to send me an email or picking up the phone to call me will alert Lyn that you're conveying a message to me or someone else.  a text on the phone is discreet and can be done less publicly and more quickly.  If Lyn needs a distraction, a quick text can result in the need for that distraction being conveyed without Lyn being made are of the request.

4. Speed #2 - Depending on the nature of the text and the recipient's current situation, the recipient may be able to quickly respond.  A response could be a quick text back to answer a question or even a call to provide Lyn a distraction.

5. Prioritization - texting allows the sender to decide the priority of the message.  Some messages are not high priority and can be relegated to email.  Some are urgent and need an immediate phone call.  There is a middle ground.  Some messages need a quick response without the delay or overhead of an email or the full interruption of the phone call.

6. Minimal Interruption - Texts can be minimally invasive.  They are great when you need a quick response and the message's recipient is at work.  The text can be sent without being a significant interruption into the person's work time and still allowing the sender to move forward.

7. Less Overhead - Emails require that you identify the sender, urge you to provide a subject and have a structure which includes much of the same formality as a letter.  Text doesn't have this overhead.  They allow you to have informal, rapid exchanges which allows you to reduce your keystrokes.  If you type as much as I do, saving keystrokes is a good thing.  In an email, I feel obligated to use opening and closing salutations.  Without them, I feel like I'm being rude.  I don't experience that with a text.  I can get a text which is a single question and I can respond with one or two words.  Both parties are happy with the exchange.

8. Communication Across Generations - Kids these days view email as Old School.  They'll respond to texts from Grandma as well as texts from their friends.

9. Brevity - Along the lines of less overhead, sometimes all you need to convey is a single question or statement.  This is particularly handy when volume of noise around you is an issue.  It's easier to text "My plane has landed" than to try to share that alert via a phone call when the noise of the plane may interfere with the conversation.  Additionally, phone calls invite more conversation which may not always be timely or possible.

10.  Pictures! - Pictures can be easily sent via text.  Personally, I find this easier than sharing them via email.  Granted, a phone upgrade would be needed for this one.

11.  Immediacy - Speaking of sharing pictures, a picture sent via text is shared immediately and you don't have to wait for an email to be checked for it to be seen.

12. Confirmation of Delivery - You can tell that a text has been delivered and read.  You can also tell if someone is composing a response to you.

13.  Grammar - Texting using proper spelling and grammar is appreciated.  Even the younger generation know that one audience is not the came as another.  The texts I get from my eldest are not structured the same way that the texts he sends to his friends are structured.

14. Greater Communication Frequency - Because of many of the reasons above, communication between people is actually increased.

15.  Because I said so!






Tuesday, December 29, 2015

Adapting to Technology

It is amazing to me to see that "We're living in the Future!" as a good friend of mine likes to point out.  We've seen the introduction of mobile phones and the transformation of those phones into mini, hand-held computers.  We've seen the advent of on-line banking, learning, and the proliferation of on-line shopping.

I don't know about you, but my Christmas shopping experience this year did not involve a single trip to the mall to buy a single gift.  I took full advantage of being able to shop for gifts from the comfort of my dining table with a cocktail in hand.  For some, it involved searching through multiple options on a particular gift and deciding on the right one.  For others, it was an easy decision because I already knew what I wanted to give.

When it came to Mom and Lyn, shopping for them was easy.  Mom had given me a gift option for Lyn and I knew what I wanted to give Mom.  Purchases were made and a quick call was placed, asking Mom to wrap Lyn's gifts because the vendor didn't provide that service.

While my family adapts to technology changes more quickly than Mom, I have hope that I can convince her that certain tech changes are worth the effort.  She's starting to make on-line purchases and we've facilitated some purchases on her behalf because our account has free shipping.  (We're happy to do so.)  She and Lyn have really taken to Skype.  Beyond that, they're not engaged with technology at a level that is very different than what they used in the 1990s.  That's OK.  It works for them.  They have what they need and they're happy with how they're set up.

Now... If I could just convince Mom to text...

Monday, December 28, 2015

Snowed In

New Mexico is hunkered down and in the middle of a blizzard.  Interstate roads are shut down from Albuquerque to the state borders.  Some of the towns have received over two feet of snow already.  Albuquerque sits in the middle of a bowl, surrounded by mountains which have protected it from the worst of the storm.  They're snowed in, nonetheless.


They've been playing games like Bingo and Memory Match and coloring.  Day hab is closed for the next couple of days and cabin fever is already setting in.  The roads are icy and it is not wise for Lyn to be out with her respite provider.  We'll probably be talking via Skype each day to help distract her until she can be back into her daily schedule.  

In all honesty, a snowed in day in Albuquerque is not like a snowed in day in Montana or anywhere else that is experiencing a blizzard this winter.  They've received less than a foot of snow so far and they're not dealing with drifts of snow that are several feet high.  But, they're still not used to this kind of weather.

Meanwhile, on the East Coast, I'm sitting here with my windows open and the thermometer sitting at 70.

Friday, December 25, 2015

Christmas 2015

Merry Christmas!!

May today be a happy day for you no matter where you are or what you do.

From the Dementia Be Damned family




Thursday, December 24, 2015

Life-Sized

I came across this picture this week as I was sorting through the contents of a drawer.



It was taken in December 1997 when Lyn and Mom had come to celebrate Christmas with us.  The Christmas Attic near the Virginia Beach boardwalk was a favorite stop for the three of us.  They were open year round even when most of the shops on the boardwalk were closed for the winter season.

The shop was family owned and operated.  I remember the building, a renovated house, was lushly decorated with each room focused on a different theme.  The porch had long been enclosed and it was the spot to find the beach themed decorations.  I preferred the large room to the right of the entrance where the register was kept.  There were ornaments from Europe in deep jewel tones.  One year, all I could really afford was a sapphire blue glass ball from Germany.  It's very large and heavy.  It even survived the year the tree toppled the morning we were planning to take it down.

Lyn, of course, loved the life-sized nutcrackers that flanked the front steps.  She insisted we take her picture that day.  She was happy to visit this store even if it was 90+ degrees with 90% humidity outside in the middle of a good Virginia summer.  We knew the shop would be refreshingly cold and dark inside on those days.

While the shop didn't survive the recession, closing in 2006, our Christmas trees still have ornaments purchased there.

Wednesday, December 23, 2015

Gingerbread

Mom and Lyn visited the Indian Cultural Center this weekend to view their display of gingerbread houses created by artists from various pueblos in the area.

Mom shared a few of her favorites.


I love seeing all the different ways that gingerbread can be used.  It doesn't matter to me if the artist has done a replica of an Art Deco hotel or a pueblo church, there's a an attention to detail which is lovely even though this is a short-lived medium.


I wonder how much these creations which layered sheets of gingerbread to form the land weigh.


The depiction of the Acoma mesa with the entire village perched on top is pretty accurate too.

My favorite, however, is a much smaller scale piece.  The touch of blue around the door and windows, the luminarias and the red of the ristra evoke for me the smell of home.



These are all beautiful.

Tuesday, December 22, 2015

A Good Aunt

Lyn's a good Aunt to the kids.

She's loved them from the moment kids came into the picture.  She's always been gentle and playful with them.  When we visit, she's got lots of hugs and is willing to sit and listen to anything they want to tell her.  In return, she'll ask them to play a game of Uno with her.

Over the years, she's made it her habit to ask about the children every time we speak via phone or Skype.  She always wants to know where they are and what they're up to.  Some days, she asks about them generally "How are the kids?"  She'll wait for me to say their names and then latch onto them when their said.  Other days, their names come to her before she asks for them.  When she says "kids," I know she's not even sure of their gender.

She's working hard to keep them in mind and the Skype conversations allow her to catch sight of them regularly.  She's always excited to see them and happy when they speak with her.  I thing she would have not been able to maintain this connection to them without Skype.  She loves them and we'll work to maintain that for her.

Monday, December 21, 2015

Too Much Noise

Lyn is increasingly resistant to going to day hab.

The volume of the music is too loud for her.  She finds it physically uncomfortable and mentally exhausting.  We've asked the staff to turn it down.  It remains high and they state that the other clients like it high.

Lyn will go to the Quite Room where the volume is lower.  Unfortunately, this isolates her from the staff and the other clients.  She doesn't like to be alone.

Mom has decided to try using ear plugs on Lyn.  They're soft and easy to insert.  They're discreet and won't be as obvious as over the ear protectors.  They're also inexpensive.  If she takes them out and they get lost, it is not an issue.

Hopefully, this will ease Lyn's discomfort and allow her to continue participating with day hab for as long as possible.

Wednesday, December 16, 2015

Favorite Scene


Mom writes:

As we left the Kimo I asked her what her favorite part of the ballet was this time.

She said she had to think about it and after we headed home she came up with something.  I could tell she was really trying to think of what to answer.

There is a scene where a "woman" (looks like a man made up as a woman) comes on stage alone.  Her bonnet is ugly and her skirt is floor length with hoops at the hips that extend out at least 5 ft each side.  After dancing around a few minutes she lifts the skirt and 3 children scurry out from under.  They dance a bit, the skirt lifted and 3 more scurry out.  The next lifting lets 2 more escape and about 5 seconds later the last one comes out.  All 9 children dance a bit with mom "dancing'' behind them.   Then she lifts the enormous skirt and all scamper back under and they leave the stage.  It's cute.

Do I believe this was her favorite scene?  Not sure.  It might be that it was OR was that the only thing she could pull to the forefront of her brain?  We'll never know.

Tuesday, December 15, 2015

Annual Ballet

Annually, the Kimo Theater is the venue for the Nutcracker Ballet.  Mom and Lyn have attended for a number of years.  Lyn loves the show.

They always get tickets for the same isle seats at the back of the theater.  There's a bit more light there than the rest of the theater and a easy escape route if Lyn should panic or need to leave for any reason.  They go to the matinee which is also chosen to ease Lyn's anxiety.

Each year's performance is a little different.  Lyn enjoys it no matter what changes are made.  Mom says she was leaning forward and smiling through the entire performance.

Before they left, Lyn had decided she was going to buy an ornament as a memento.  She's acquired a couple over the past couple of years.  This year, she bought a Clara ornament.  She was very happy with her purchase.  She offered to buy me a nutcracker, saying I could put it in front of my tree and no one would bother it.  It was a generous offer which I declined.  My tree is very full already.


She had a great day.

Monday, December 14, 2015

Sharing Christmas

Mom decided to host a Christmas open house on Saturday.  A small number of friends and family were invited.  They were encouraged to come at a time in the afternoon which was convenient for them.  The result was their guests were spread across the entire afternoon.  Lyn never had more than a few people to deal with at a time.  This allowed her to feel comfortable and avoid becoming overwhelmed.

Mom had a full table of food with posole, queso and several types of cookies available for their guests.  Lyn filled up on chips and dip.  The posole was a hit and Mom found a single hominy kernel was all that was left at the end of the day.

When each of the guests arrived, Lyn would have Mom pull up the video from Santa.  Lyn wanted them all to see it.  She sat through it each time as though it was the first time she'd watched it.  She responded to Santa's questions and waved to the elves when he prompted her.  My uncle was delighted in her joy and was much more interested in her reaction than in the video.

In case you're wondering, she's forgotten about Mrs. Obama's picture and letter from last month.  Besides, Mrs. Obama doesn't rank higher than Santa in Lyn's mind.

At the end of the day, both were happy.  They had time to visit with each person and their guests left full and smiling.

Friday, December 11, 2015

Christmas Lights

Starting around Thanksgiving, families in the US start putting up their Christmas decorations.  The Thanksgiving dinner has been consumed.  The sun sets and the Christmas enthusiasts flip their collective switches and turn on their lights.  The Thanksgiving Parade early in the day is the official sign that you may now flip on your lights without fear of your neighbors displeasure.  The parade ends with Santa ushering in the Christmas season.

Well, I'm a bit of a grinch when it comes to outdoor holiday decorations.  My husband and I have now had the odd luck to live in two homes in two different parts of our state which just happen to have an insane level of holiday cheer on display.  In both cases, we moved in during the summer only to discover that our neighbors clearly graduated from the Griswold School of Home Decor.  I have little tolerance for lines of cars slowly creeping down our street as families stare at the various light displays others put up.

Last night, as I turned onto my street, I realized the looky-loos have arrived for the season.  It was a Thursday night and cars were creeping along, stopping for long moments in front of each lit up house.  Many will leave their lights on all night.  Some, will turn off half of their lights about 10 pm and the rest sometimes go out sometime after 1am.

Two immediate neighbors after half of their lights are out for the night

As much as the Christmas tourists annoy me, I know they enjoy it.  I remember many times that we would get excited at the prospect of seeing the lights around town.  We'd jump in the car and drive to the Country Club area, Old Town or another neighborhood which was known for good light displays.  Mom would sometimes just pick a street at random and say "Let's see what's down here."  Many miles were put on her car as we drove around town.  I remember those drives as being quiet and happy times.  We were too busy looking at the lights to squabble.  We loved it.

While she doesn't like being out at night, Lyn still has that love of the Christmas lights.  She's visited here and walked down my street, enjoying the displays my neighbors have put up.  She's pointed out familiar characters like Rudolph, Snoopy or Frosty the Snowman with delight.  She's the exact type of person my neighbors are hoping to please with their efforts.  She appreciates the work they have put into stringing their trees with lights, festooning their lawns with dioramas, installing a Christmas tree on their roof and driving their electric bill into the $1,000+ range for the month.  (No joke.)

As for me, I'll grumble every time I find people blocking my driveway and at each tour bus that rumbles past my house.  I'll grouse about school nights and kids needing to be home instead of rolling past my door at 10pm on a Tuesday. (I don't gripe about that on non-school nights.  I'm not a total ogre.)  Most of all, when the time comes that we move to a different house, I'll make sure we don't end up in another neighborhood where you need room darkening shades because your neighbor puts enough lights on his house that you can read the newspaper in your room with all your lights off.

Until then, I'll hopefully realize that 30 people milling in my driveway are caroling before I yell at them to move so I can park.

Wednesday, December 9, 2015

Doctors Visits

Lyn was seen by her doctor yesterday.  She's got another cold that is expected to go into another sinus infection and/or ear infection.  A prescription is ready and waiting to be filled if she doesn't improve over the next few days.

Yesterday, Mom surprisingly heard from the doctor who received a referral to do a new neuro-psych evaluation on Lyn back in October.  The doctor has agreed to do the testing and Lyn is scheduled to be seen over three days in early February.  We honestly had given up hope that this would be scheduled.

Monday, December 7, 2015

Search for Santa

This past weekend, Lyn's respite provider took her to the Festival of Trees at the Convention Center.    They enjoy seeing all of the decorated trees which are on display and up for sale.  Santa is also a fixture at this event.  This leans that Lyn had to get a picture with him.


Lyn loves every opportunity she has to encounter Santa.  She gets so excited!

Notice her hand on his knee.  She's a bit fresh sometimes.  I can tell she was feeling flirty.  She informed me that she kissed him this year.  I acted a bit shocked and asked what Mrs. Claus thought of her kissing Santa.  She completely dismissed my question and justified the kiss with a "Well... it was free to the public!"

The other thing I notice about this picture is that her clothes are getting baggy on her.

She's happy though and she had a good day.  

Thursday, December 3, 2015

International Day of Persons with Disabilities

Today is the United Nation's International Day of Persons with Disabilities. This year's theme is Inclusion Matters.

Did you know that approximately 15% of people have a disability?  That's about 1 person out of every 7 or 1 Billion people currently on Earth.  The UN has more facts that you might want to check out.  They also have the Convention on the Rights of Persons with Disabilities.

I grew up with Lyn being included in everything.  Her disabilities were not used to keep her separate from the actives the rest of us enjoy.  The unfortunate reality is that not everyone who has a disability is included in daily activities or provided with access to education or other needed resources, including health care.  There is a tremendous amount of improvement that can be done in each of our communities to include everyone.

What can you do in your community to help improve inclusion?




Wednesday, December 2, 2015

Portable North Pole 2016

It is December and that means it is time for the return of the Portable North Pole!

Lyn got her annual video message from Santa and held her breath while watching it.

Mom sent me a couple of pictures of Lyn watching the video.


She held her breath again.  When her name was stated, Nikka's head popped up and she came over to lean against Lyn.


Mom says the video is the highlight of the season for Lyn.

I called shortly after she got it and she was so excited!

Me: How do you feel?

Her:  Happy!  Glad!  Happy!  Excited!  Yeah

Me: What made you feel this good?

Her: Every year on santa.com!  He's going to talk to me and they have a big book and a file.  He has my name and I don't know what else.  He has all the information.  I had to hit mute on the TV and Mom called me over.  And get this!  He's going to still be talking to me when Christmas comes.  He has all the information!

(She says it is from Santa.com but the videos are from portablenorthpole.com.)

Monday, November 30, 2015

Dialing

I've had to laugh at myself a lot recently.

I call Mom multiple times a week.  Her phone number is programmed into my house phone as well as my ell phone.  I don't rely upon a speed dial code.  I have long been in the habit of dialing her number fully each time I call.  I don't know why.  I just do it.

Lately, when I dialed, I would have to hang up and dial again, stopping myself before the number was complete and connecting the call.  I realized that each time, I was dialing the number that was Grandma's for decades.  I would dial the area code and exchange and start on the last four digits when it would hit me that I was dialing the wrong number.

I have no idea why this number kept popping up.  Clearly, some connections between neurons were firing.  I told Mom about it and her response was "Don't tell me you've got it too!"  I don't.

It just fascinates me that we know so little about how our brains work.  Why was the number being dialed without me even thinking about it?  Why was I recalling my Grandparents' number?  What triggered that memory and maintained it for so many days?

In the past week, the number has stopped popping up for me.

Thursday, November 26, 2015

Thanksgiving 2015


May you have a day full of happiness and peace.  
May you have food on your plate and a warm place to rest your feet.  
May you have a cold nose and a warm heart to keep you company, if you are so inclined.
May you have good weather and safe travels.
May the miles between you and your loved ones not be a burden or a barrier to your happiness.


Wednesday, November 25, 2015

Michelle's Husband

A couple of months ago, Lyn saw President Obama on television.  Mom asked her if she knew who he was and Lyn delivered The Look at epic levels.  "He's Michelle Obama's husband."

Lyn's response tickled Mom.  She agreed.  Lyn was right.  Mom pointed out that he's also the President.  Lyn, of course, "knew that but he's Michelle's husband."  For whatever reason, his role as Michelle's husband was more important or memorable to Lyn than his role as President.

Mom wrote a quick note to the First Lady, hoping that she too would find it funny.  Mom's note explained a bit about Lyn and Nikka so that Mrs. Obama would have context for the note.

Yesterday, a large envelope was delivered to their door.  Inside, Mom found a personally written note from the First Lady.  Mrs. Obama mentioned Nikka in the note.  Lyn was very excited!  Mrs. Obama included a picture of herself with her dog Bo.  Lyn loves the picture but thinks "they should get a Pit."




Tuesday, November 24, 2015

Planning for Santa


Lyn's thinking ahead and planning for Santa.  

She's already announced that he's going to bring her a surprise.  She's not sure what it is and doesn't know what she wants him to bring her but she just knows he'll surprise her.

She asked Mom "Do you think this year when she calls Santa Clause, I can pick the picture he uses?" She was thinking of the Portable North Pole videos I've set up for her the past few years.  Mom sputtered for a few moments, trying to come up with a response.  Finally, she gave up and offered "No.  He chooses the pictures he wants."  Lyn doesn't know I supply the pictures.



Monday, November 23, 2015

Sundowning Strongly

Last week, Mom had a meeting to attend in the evening for her Home Owners Association (HOA).  The quarterly meetings are held at the local police stations about 2 miles from the house.  Lyn has always gone with Mom even if the meeting is after dark.  She just takes a dose of her medication to try and keep the Sundowner's anxiety under control.

Last week's meeting was short.  They didn't have a quorum and couldn't get the business of the day resolved.  They did answer some questions posed by one of the community members who attended but were done in well under an hour.  Mom could tell Lyn was anxious to leave and they were quickly in the car on the way home.

Lyn didn't know where they were.  She didn't know the way home.  Lyn was so frightened she was shaking and sobbing as she demanded that they go straight home.  She didn't want Mom to stop anywhere.  Mom assured her they were going home but explained she had to stop.  Before Mom could say "...at the red lights", Lyn wailed "No!! Don't stop anywhere!"  Mom was able to convince Lyn that red light stops were required.

Lyn's getting more and more afraid of being out of the house after dark.

Friday, November 20, 2015

Mrs. J

Let me take a quick diversion of our usual blog topic to say good bye to Mrs. J.

Mrs. J passed away this week after fighting cancer.  She lived long enough to meet her newest grandchild.

Mrs. J and her husband ran the Explorer Troop with the Sheriff's office there in Albuquerque for many years.  My brother was very involved with the organization through middle and high school.  Mrs. J was a force to be reckoned with and our families have maintained a connection ever since.  She loved her family and the kids who participated in the Troop.  She was kind to my sister.

She passed at home with her husband at her side.


Dormit in pace.

Wednesday, November 18, 2015

Unintentional Slimming

Lyn lost three pounds between her recent visit with her doctor in which she was diagnosed with a sinus infection and her visit a week later when it was bronchitis.

She's not exercising regularly and not on a diet.  She's not eating much though.  She's often not hungry and really has very little interest in food anymore.  We've also noticed she's starting to complain of a stomach ache after she eats.  She can't smell.  She can't really taste as a result.  She doesn't get pleasure from eating and would probably forget to eat if Mom didn't prompt her.

The weight loss doesn't happen with each visit.  However, it is steady and pretty consistent.  She has not registered a weight game in over two years.  While she's been over-weight (as are we all) for some time, the weight loss isn't a great thing either.  It is another symptom of her disease progression.



Tuesday, November 17, 2015

Double Time Changes

I've been putting off this post but procrastination doesn't change the reality of the situation.  The changes are happening quickly right now.

She's forgetting more words.  She is definitely using common words but is struggling with longer words.  This weekend, she tripped over "accident."  The conversations with her have her searching for words and trying to cover but her covering is less refined that it was even this summer.

Her vocabulary is not only reducing but she has less mental flexibility for the words that others use.  If you use a preposition and you could have just used an adjective, she will correct you.  I think she's having a harder time breaking down the sentence with the prepositions.  For example, recently, Mom reminded Lyn her gloves were "in the pockets of your coat."  Lyn countered with "No.  They're in my coat pockets."

Mom is now having to set out clothes for Lyn most days.  There are days when Lyn will completely overlook the clothes Mom sets out and then is terribly confused in getting dressed.  She calls it "being in La-La Land" and she doesn't like it.  On the La-La Land days, she struggles to remember what to do next.  Mom will ask if she's made her bed and Lyn will respond with something along the lines of "No.  Should I?"  When Mom responds with "Yes", Lyn will wander off to her bedroom.  Mom gives it a few minutes and then goes to check on her.  Several times now, she finds Lyn just standing, staring at her bed without a clue of where to begin or what she's supposed to do.  Mom will prompt her with a reminder that she knows how to make her bed.  Currently, this approach stirs the brain and she's able to start moving again.  Once she starts, she's still able to make it and does a good job.

She still wants to put order to things.  It bothers her to see her beads out of order but she cannot manage sorting them much any more.  They're too small.  This weekend, she was unhappy that her crayons were "mixed up in the box (she) puts them in."  She tried to sort them but found all of the shades confusing even though she was doing a good job of sorting.  She gave that up and dumped them back into the box, still bothered they were mixed up.


She will wander from task to task, unsure of what to do.  Transitions are hard and when you don't have the mental stamina to stick with anything there's a lot of transitions in your day.

Monday, November 16, 2015

Hoping to Re-Evaluate

When Lyn was originally diagnosed, she went through a neuropsych eval.  It wasn't a positive experience and Lyn remembers that the person who performed the evaluation made her cry and Lyn didn't like her.  We had decided then that in a few years we may try to repeat the evacuation to see how she's progressed.  Lyn's doctor would like Lyn to undergo another neuropsych evaluation as well.    At this point, we don't think we're going to be successful in making that happen.

In late July, Lyn's doctor filled out the request form to request a neuropsych evaluation be performed by the clinic at UNMH who evaluated Lyn a couple of years ago.  After a long wait, we have heard back from them and the answer is that the "doctors have declined to to see this client."  No additional answer is provided and Lyn's physician has been unable to get a response either.

We suspected that Lyn would be declined by the university's hospital and reached out to a clinician recommended by Lyn's behavioral therapist who indicated this clinician "works with out population and does this testing."  We've submitted two requests because the first one disappeared.  There's crickets there too now.  Based off the amount of time which has passed and the fact that they are not returning any calls, we suspect that clinician is also declining to see her.

The challenge is that there are very few places to get an evaluation done.  Perhaps they are full.  Perhaps they have reviewed her file and determined that it is a moot point to re-evaluate her.  She has Alzheimers and we know she has the disease.  We know it is progressive and terminal so, why bother?

It is not a life or death situation.  We know she's declining.  We can see it.  However, I think her doctor is interested from a medical perspective to determine where she is in the course of the disease. We are as well.  It is disappointing but it won't change the course of her care or the outcome of her disease.

Friday, November 13, 2015

A Doctor and an Spontaneous Visit

Lyn was back at the doctor's office yesterday.  She's now been diagnosed with a case of bronchitis.  A new prescription has been filled and she'll be seen again in a few days if she's not better.  This totally explains the lack of even her regular level of stamina and the cough.  She's not been observed to have a fever.

Yesterday's activities included a stop at a favored restaurant after the doctor's office where she and Mom had an unplanned meal with one of my childhood friends.  Mom and Lyn had been seated for only a minute or two when my friend walked in with her mother-in-law.  Seeing the line of waiting guests, they were about to leave when Mom caught their attention and waved them over.  The two ladies joined Mom and Lyn at their table, avoiding the wait or the need to go elsewhere.

Both families report to me that they had and enjoyable meal together.  I'm glad they had the chance encounter.  I'm sure it brightened the day for Mom and Lyn.  Both love visiting with friends and family.

Wednesday, November 11, 2015

The Merry Go Round

When you ask an Alzheimer's caregiver how they are doing and how is the person for which they are caring, you might find yourself thinking that you've heard certain phrases before.  

You'll hear things like "Our new normal is..." or "I think he's transitioning again..."  You may hear litanies of skills lost, changed preferences, and new behaviors.  You'll hear of accommodations made, appointments kept and doctor's advice.  You'll realize, if you stick around long enough or ask frequently enough that there seems to be a pattern and some of these phrases are trotted out more than once.

You'd be right.

The fact of the matter is Alzheimer's seems to be a cyclical disease.  The decline comes in fits and sprouts.  The process is slow enough that we can measure and mark the changes.  We have time to adjust and to accommodate the changes.  We have time to put on the cloak of "our new normal" and wear it in public, presenting a face of acknowledgement if not outright acceptance.  What other choice is there?

To rail against it when you ask would be a breach of social decorum.  Oh, there are rants.  They are reserved for those who understand.  The curious colleague or community acquaintance is not to be subjected to a moment of venting.  There's no specific rule that guides this; just the social conditioning that's endemic in our culture.  Plus, we don't want to scare you off by revealing the frustrating and bleak moments that are part of the care giver's life

So, the care giver sits on their horse going up with the good days and going down with the not-so good days repeating the same circle as the music slowly winds down until they can finally get off the merry go round.

Tuesday, November 10, 2015

Bosque in the Fall

Mom and Lyn drove down to the Bosque on Sunday to get in a little bird watching.  A family friend had let Mom know that the snow geese had returned.

The Bosque is only about an hour South of them and they can visit and return home in 4 hours.  The sky was a typical New Mexico blue on a beautiful fall day.  The snow geese where in huge flocks and Mom and Lyn spotted a couple of mule deer wandering around the field where the flock was resting.  They watched bald eagles play and a heron wade through the water.


Lyn wasn't feeling her best and even the little bit of activity wore her out.  However, she was up for looking at the birds using Grandpa's binoculars.


Monday, November 9, 2015

Importance of a Routine

This weekend was a productive one for me.  I need up speaking with Lyn and Mom via Skype twice.

I had forgotten that Lyn was going out with her respite provider on Saturday, had finished the weekend errands and decided to see if they could Skype.  I knew I was planning to spend that majority of Sunday sewing and figured a Saturday call would work.  Lyn was out but Mom accepted the chance to chat.  When Lyn arrived back home, we were still chatting and decided to break so she could get settled before resuming the conversation.

When we hung up, I figured their Sunday plans and the completed video call would keep Lyn happy.  They went to Bosque del Apache early Sunday morning, breakfast burritos in hand.  (That's the best way to kick off a day's adventure if you ask me.)  On the way back from the Bosque, Lyn wilted and cried.  She was exhausted.  She's still not feeling great and over did it on Saturday.  She wanted to speak with me.  So, when the got home, Mom called to see if we could speak on Skype.

Lyn claims she knew we spoke the day before.  I'm not convinced but that really doesn't matter.  I turned off the sewing machine and logged into my account so we could have another conversation.  From Lyn's perspective, it was Sunday and we Skype on Sunday.  So, we did.

The routine is critical for her and I should anticipate similar requests in the future.  I even have Skype on my cell phone to accommodate her schedule needs.  Technology is honestly awesome and I'm so glad we have these tools at hand.

Friday, November 6, 2015

Sinus Infection

She's fighting another sinus infection.  It has been brewing for a few days.  She's been seen by her doc and medication has been prescribed.  Hopefully, she'll have a quiet weekend and start to be on the mend.

On the plus side, she didn't loose weight between the doctor's visit yesterday and her most recent visit.

Thursday, November 5, 2015

A Diagnostic Maze

A virtual maze has been designed which can predict who may develop Alzheimers.  The person who is being evaluated tries to navigate the maze while their brain is being scanned by an MRI.  How well they navigate through the portion of the mae which does not have the same visual clues as other areas is the indicator.  This is based off the research which discovered that the brain has grid cells which allows the individual to successfully navigate through space.

My husband jokes that I am navigationally challenged (rumors, I say!).  Perhaps I too should take this test.  But, what would the test reveal if the participant can't navigate the maze without gettion motion sick.  There is a reason why I had to stop playing video games with a first-person perspective.

It is interesting though to see such tools being developed.  Ten points to Griffindor for the test being effective and non-invasive.

Tuesday, November 3, 2015

Finding the Humor

Last night, my husband and I watched Jim Breuer's comedy special "Jim Breuer: Comedy Frenzy" with our eldest.  We're familiar with Breuer's comedy having seen his earlier work on Saturday Night Live and his goat boy pieces.  This special was a bit different than his other work that I've watched in that it made me a bit uncomfortable.  I was a bit discomfited by his discussion about his father.

His father moved in with Jim and his family after his Alzheimer's diagnosis.  Jim took his father with him on tour.  At least a third of Comedy Frenzy is about his father's Alzheimer's and the reality of dealing with an adult unable to control his own bowels.  The part that particularly was difficult to watch was the revelation that his mother now had Alzheimer's.



Is it funny to hear about having to hose off his father?  Yes.  It is.  It is very funny to hear Breuer's version.  Is it acceptable to discuss dementia as part of a stand-up routine?  Yes.  Stand-up comedy can take situations we don't want to experience and present them to us in a different light.  Tig Notaro's "Hello, I have cancer" is a brilliant example of using humor to deal with life and adversity.  Did it make me uncomfortable to laugh about the Dr. Kevorkian bit?  Definitely.  Part of my brain was thinking about all of the posts I've read in an online support group to which I belong and wondering how this scenario would come across in a post.  That's my problem; not Breuer's.

He clearly loved his father.



So, if you have a chance to see Comedy Frenzy, let yourself enjoy it.  It really is a laugh!

Monday, November 2, 2015

Daylight Savings

Daylight Savings Time must be something that someone thought was good at some point.  If you're looking to get one more hour of sunlight in the summer months after your work day has ended then, you get that.  However, the practice is not universal in our country much less the world.  For someone like Lyn, Daylight Savings Time is meaningless.

Lyn has been going to bed by 5pm lately.  Her summer peak of 6 or 7 pm has diminished with the reduced sunlight.  She's also sleeping 13 to 16 hours again.  She is much more tied to the clock than the rest of us.

With the time change, we had anticipated she would be ready for bed by 3:30 or 4pm.  She wasn't.  At 5, she was finished with dinner and was coloring but wan't ready for bed yet.  By 5:27, the sun was fully down and she was in bed asleep by 5:30.  She had more energy yesterday because she hadn't gone to day hab.

We'll see where she settles herself over the next few days.

Wednesday, October 28, 2015

Stigma and the Intellectually Disabled

As I think back over Lyn's life, she has experienced the stigma that is often associated with being intellectually disabled.  However, I don't remember it being horrendous.  I can think of some incidents but for the most part, I don't recall it being a daily or pervasive issue.  Perhaps Mom's perspective was different.

I do specifically recall that when we lived in a small town in Montana, Lyn was tolerated by the locals because she was not perceived as a threat to the community.  The term threat is a loaded one here.  We were outsiders and we were not welcomed.  Lyn was tolerated because people assumed that she would never get a job or "take a job from a local."  I did get a job and I was considered a threat.  (Perhaps walking down the street with my pet rat on his leash didn't help.  But that's a different story.)

I encountered an article titled "Is It Possible to End the Stigma of ID/DD?"  It is an interesting article and raised the topic for me.  You could never claim Lyn was lazy or dangerous.  I have, however, seen this claims and this stigma directed to others that Lyn knew from school or Special Olympics.  I have seen people afraid to shake hands or give a hug to someone who is intellectually disabled.  I have seen people who I thought were rational or kind go on a tirade about how individuals with intellectual disabilities are selfish and manipulative.  I even knew one mother (not mine) who would say things like "I guess I have to go pick up the retard (her son) now."  There have been times when I have been aghast at what people say.

That's why I love organizations like Look Cook and Eat, Ruby's Rainbow and Special Olympics which promote knowledge, understanding and positive approaches.  I love reading articles which feature individuals with intellectual disabilities doing what they want to do and being successful.  The more we see, the more we normalize and less stigma remains.

Stigmas be damned!

Tuesday, October 27, 2015

Chastised Again


I try to watch my language depending upon the situation.  At work, I definitely have a persona I try to maintain.  At home it relaxes a bit and I say things of which Lyn doesn't always approve.  One of those slips happened on Sunday while we Skyped.

My eldest was sitting next to me on his own laptop listening into the conversation.  I turned the camera to him and asked him to tell his Grandmother why he was late getting home from school on Thursday.  I knew there would be a smug smile and wanted her to see it.  He explained and we all got a good laugh out of the situation.  Without thinking, I commented that his "life must suck" because he had been invited to spend an hour in the school weight room with the girl's volleyball team.  

Within a few moments, Lyn was chastising me about my choice of language and that we never say these things.  She couldn't quite form her sentences.  The tone and thought being conveyed were familiar enough that I clued into her meaning.  When I scanned back though my memory of the conversation which had just taken place, I realized she was unhappy I had used the word "suck."  

Ah well... being chastised in that moment was worth the exchange with my eldest and my Mom.  I'll stand by my words and let her express her displeasure in my choices.  It didn't help that I was drinking some hard cider when we were talking.  She disapproves of that too.  

Monday, October 26, 2015

High School Reunion

Mom received an invitation to her high school reunion and wanted to attend.  She thought about it and debated her options for being able to go.  She decided to go to the Friday night event and realized she needed to line up care for Lyn.  Lyn would not be able to attend.  It would have been late, with many people and Lyn would have had great difficulty attending.

Mom considered several options and reached out to the Alzheimer's Association in the process.  They recommended that Mom line up the services of a care provider from Comfort Keepers.  While Mom could have asked Lyn's regular respite provider if she could do it, Mom didn't want to ask her to work overtime.  Mom ended up interviewing with Comfort Keepers and decided to enlist their services for the night.

As the date approached, Mom and I had several conversations about her reunion.  I could tell it was important to her.  She wanted to go.  She was also debating with herself.  She would contend that she didn't know what to wear, that it would be easier to stay at home, that it would be costly to have someone come stay with Lyn even for a few hours.  There was fear, doubt and guilt being expressed.  All I could say was supportive words like "I hope you go.  I think you should go.  You'll enjoy yourself.  You need a night off."    

Mom went.  She assures me she had a delightful time.  She was able to reconnect with folks from high school, even encountering an ex-boyfriend.  The exchanges were relaxed.  Her class mates and their spouses were charming.  The tone of her description of her night out include pleasure, relieve and delight.

As for Lyn, she enjoyed herself.  She was at home with Nikka and the staff from Comfort Keepers.  She had one-on-one care and was the center of attention.  They played games.  Lyn was relaxed and happy.

So, for both, the night was a great success!

Thursday, October 22, 2015

Wednesday, October 21, 2015

Time to Switch

It is time to switch to one-on-one care for Lyn.

Last week, she only agreed to go to day hab twice.  She fully refuses to go on any of the day outings.  The commotion of all the clients is too much for her to process.  We know she's transitioning to the next stage of Alzheimer's and it seems like this fall is seeing a lot of changes for her.  Even her behavioral therapist has noted that in the past couple of weeks, Lyn's ability to cope with day hab is greatly diminished and new resources need to be put into place.

While this was discussed at the last team meeting, it was done in terms of "when the time comes..."  Well, the time has come and her behavioral therapist has started that ball rolling.

Tuesday, October 20, 2015

Grow New Brain Cells

Remember the recent post about the hippocampus?  One of the tidbits is that there are two types of cells in the hippocampus and one becomes hyperactive later in life.  Keep that in mind as you watch this Ted Talk titled "You can grow new brain cells.  Here's how."




Now, get up and and get the blood flowing to your brain.

Monday, October 19, 2015

Eye Exam

Lates last week, Lyn had her annual eye exam.  Lyn saw a different ophthalmologist with the practice than who she has previously seen.  He evidently had not read her chart prior to seeing her.

Her prescription has changed very little this year.  The significant change is that she no longer has the ability to tell the relative distance between things. Her depth perception is gone.  The doctor was confused.  He indicated that this would happen normally if a person had crossed eyes or a lazy eye.  She has neither.  Mom asked if this is a result of the Alzheimer's.  The doctor was a very surprised by the question but immediately answered with "Yes!"

The lack of the depth perception isn't a big surprise.  We've seen her struggle to figure out where to put her feet when faced with stairs or a curb.  We just didn't realize it was gone.


Thursday, October 15, 2015

Casual Education

There are times when I think I might be a good teacher.  I can be excited about a topic and want to share what I know about it.  Ask me about dinosaurs or bees and I'm going to assume you are a sponge to soak up all the info I'm about to share.  Ask me about Alzheimer's and I'll do the same thing but with a different tone.

I find a lot of people don't know a lot about Alzheimer's and they are uncomfortable talking about it.  I chalk that up to people being generally uncomfortable discussing terminal diseases, death or disability.  Sometimes, I get the feeling that they assume that I'm uncomfortable and they're afraid they're entering into an emotional minefield.  I assure you I'm completely comfortable discussing Alzheimer's.

It is an interesting dance to watch as people who are not directly impacted by Alzheimer's try to figure out what is safe to ask and what is not safe to ask.  I try to keep the tone of the conversation casual and informative without being a downer.  It is important to let people know that Alzheimer's is terminal and to acknowledge that physical, mental and emotional decline are all part of the disease.  I try to buffer these crucial points with highlights of amusing stories so that there are moments when people can feel safe in smiling or so they can recognize that humor is still part of the equation.

Yesterday's moment of casual education came about as a result of a conversation which started about bees.  I mentioned we have an out yard on the edge of the Potomac River and we want to move to that neighborhood within 5 years.  We like the area and know of several homes with in-law suites.  I was asked why that was import to us and I replied that "when my sister passes, we want my Mom to come live with us but have her own space."  My colleague was floored at the phrase "when my sister passes."  He indicated that he "knew she has Alzheimer's but didn't know she was otherwise ill."  I quickly realized he didn't know that Alzheimer's is terminal.

He didn't realize that Alzheimer's was a progressive or degenerative disease.  He thought that Alzheimer's patients just didn't remember everything anymore but that they pretty much stayed the same after that.  We work for a software firm and I was quickly able to explain that having Alzheimer's is like when the CPU of the computer is starting to fail and you find that the drivers start to fail as well or other portions of the computer stop communicating with each other properly.  With computers, we can swap out components and limp along for a while.  We can reemerge the machine and get a bit of a do-over.  With humans, we cannot.  If our brain is failing and if the brain controls everything else in your body, then the body is failing.

The conversation wasn't upsetting nor a downer.  It was a moment of casual education and my colleague has a little more knowledge today than he did yesterday.


 

Wednesday, October 14, 2015

Skipping Day Hab

On Sunday, as Mom was tucking Lyn into bed, Lyn asked if she had to go to day hab on Monday.  Mom assured her it was her choice.  She didn't have to go if she didn't want to.  Lyn said "Well, I don't want to go tomorrow."  When Mom asked why, it took several attempts for Lyn to get past saying "all the" repeatedly and finally get out the thought of "all the noise."

Lyn didn't go to day hab the next day.  She stayed at home with Mom and was mostly quiet, spending a large portion of the day coloring.


Mom will ask her each day if she wants to go and will encourage her to go.  There will be days when Lyn doesn't have much choice.  She will have to go so Mom can tend to things like participating in her Alzheimer's support group.

Tuesday, October 13, 2015

Look Cook and Eat

A year ago, I backed a Kickstarter project called Look Cook and Eat.  Look Cook and Eat is an online cooking magazine targeting individuals with intellectual disabilities.  It has been interesting to get updates from them for the past year as they shared their progress with their backers.  Yesterday, I received another update.

I'm happy to learn that they have launched their service.


Congratulations to the staff at Look Cook and Eat!  May you have great success and may your clients delight in the service you are providing.

Monday, October 12, 2015

Balloon Fiesta 2015

The past two weeks have filled the skies over Albuquerque with hundreds of hot air balloons.  The Albuquerque International Balloon Fiesta has been underway and the city is hosting 550 balloons, their pilots and crews.  While smaller than in previous years, the event is not to be missed.

Lyn loves the special shape and there are several new ones this year.  I was just looking through the gallery and spotted a great balloon called "Robbie."  Robbie is a boy in a wheelchair reaching for a star.  I love it!

Lyn has been saying that she wanted to go to the Balloon Fiesta Park with her respite provider this weekend.  Both Mom and the respite provider would have made that happen if they thought Lyn could handled it.  At this point, we don't think she can.  She's gone in previous years, however.

Going to the field is an effort.  You have to get up early and be out the door in enough time to arrive at the field before 4:30am.  You have to go to the Park and Ride area to be shuttled into the field.  You're at the field with as many as 100,000 other guests and hundreds of balloons.  The field is a a hands-on venue.  Guests walk between the balloons and may be pulled from the crowd to lend a hand.  They're encouraged to speak with the pilots and learn about ballooning.  Some balloons, such as Darth Vader and Master Yoda end up having their own crowd control groups.  Those two balloons are supported by a local garrison of the 501st who provide Storm Troopers every day of the fiesta.  The field is ringed with vendors selling everything from balloon pins to burritos.  It is chaos.  It is a calm and beautiful form of chaos but chaos nonetheless.

Mom asked if Lyn wanted to get up at 3am?  No!  Did Lyn want to deal with the Park and Ride shuttle?  No!    Did Lyn want to deal with 100,000 people?  "No!  I can't deal with that!!"

She opted to go bowling instead.

Thursday, October 8, 2015

October's Team Meeting

Tuesday was the monthly team meeting in which the individuals involved in Lyn's care get together to discuss what has happened in the past month, what actions need to be taken and review how Lyn's doing.

Mom mentioned how early Lyn has started going to bed again.  (There are days now when Lyn struggles to be up past 5pm.  Yesterday, she bathed and was in pajamas before 2pm.)  Lyn's behavioral therapist offered up an insightful response:

"Of course, you are tired.  You work so hard and your brain is tired by the end of the day."

Lyn's time at day hab is becoming overwhelming for her.  The staff at day hab keep the music on and up all day.  Lyn's behavioral therapist is scheduled to do some training with the staff there this week and she intends to suggest the music is turned down or even off for part of the day.  She says it is difficult for others to concentrate and the impact on the constant noise is not limited to Lyn.

Mom and the behavioral therapist both think that the time at day hab will be less and less over the next year.  We're already seeing days in which Lyn is asking to stay home or otherwise expressing a desire to not go.  Lyn's case manager informed Mom that when Lyn can no longer attend day hab the funds which pay for the service can be transitioned to paying for 1-on-1 coverage.  This coverage is more expensive and may require additional funds.  When Lyn is no longer able to leave the house, this coverage is a necessity so Mom can still leave the house to tend to everything from grocery shopping to Alzheimer's support group sessions.

Lyn's respite provider was in tears over this discussion.  She doesn't like to acknowledge that Lyn's progressing pretty quickly or that Lyn will be homebound sooner rather than later.

Tuesday, October 6, 2015

The Hippocampus and the Research

The human brain has a hippocampus buried deep in each half.  It helps process short term memory and to navigate through a space.  It is one of the earliest portions of the brain damaged by Alzheimer's.

If the hippocampus is a key component in the creation of memories and moving an experience from short term to long term memory, then damage to the hippocampus will prevent the person from learning and retaining new information and experiences.  Alzheimer's patients how this lack of ability.  The other impact to damage to the hippocampus is that the person can no longer successfully navigate.  Sound familiar?  Going from spot A to spot B is now an unknown even if you've been there a million times before.

We've seen both with Lyn.  She cannot tell me what she did yesterday unless she's prompted.  She does not know the routes between places any longer.  She doesn't know the way to Santa Fe.  She doesn't know the way home.  These factor into her anxieties.

So, where does the research come in?  Researchers at Northwestern University just published a study in the Journal of Neuroscience which indicates one type of cell in the hippocampus can become more active as the brain's owner (in this case rats) ages than another cell.  The more active cell in this study is the CA3 Pyramidal Neuron.  The research is interesting because it suggests that facilitating the increase in CA3 activity while the other cell activity is decreasing is a potential treatment approach.

Monday, October 5, 2015

Winter is Coming

The weather this past week has gone from Summer's hot and humid meltiness to Fall's cold and rainy days.  We have not see the sun in a week but were fortunate to only have a few inches of rain instead of the many inches which were predicted early in the week as we waited for the Noreaster and Hurricane Joaquin.  

It reminded me of the years when we lived in Virginia Beach.  Mom and Lyn would often plan their annual trip out towards this time of year in the hopes of missing the humidity and the worst of Hurricane season.  For the most part, they succeeded.  There was that time that they arrived just before Hurricane Dennis came ashore.  After that, the visits were pushed to later in the year, sometimes approaching Christmas.

So, for me, these Fall days that are drenched in rain and gray are not miserable.  They're a welcome break from the humidity which makes it hard to breathe here in the Summer.  They remind me of good visits with Mom and Lyn, of times visiting the few shops which stay open all year at the Beach, of watching my sister enjoy the waves at the beach even if she wouldn't step into the water.  



Yes, Winter is coming and with it Lyn will retreat more.  But there are still days that are bright and clear and bracing to be enjoyed.

(I have not yet watched Game of Thrones but I have read all of the books.)

Thursday, October 1, 2015

Is Alzheimer's Transmittable?

So, here's a frightening thought;  you go in for surgery and the surgeon uses instruments on you which had previously been used on an Alzheimer's patient. The hospital had sterilized the instruments.  They were not negligent.  You later develop Alzheimer's. Coincidence?

There's a new theory that there could be a form of Alzheimer's which is transmitted from person to person in the manner described above..  This theory is a new one and a highly controversial one.  If true, it would introduce a third type of Alzheimer's. We know there is spontaneous Alzheimer's (it happens and we don't know why) and familial Alzheimer's (it is a result of an inherited gene).  If there is a Transmittable form of Alzheimer's, it would mean that this form of the disease is not the result of a gene but the result of prions.

As I stated, the theory is controversial and government health agencies are coming out to indicate there is no such thing as transmittable Alzheimer's. The finding is from one study which only looked at 8 brains. Much more work and a greater sample set is needed before any of us should worry.

Wednesday, September 30, 2015

Shedding Her Inhibitions

Mom writes:

Well, end times are truly here!

In the not too distant past she NEVER came out of her room or bathroom unless completely dressed.  Lately, she got to where she would come to the hall or living room asking for me to hook her bra.  Now she'll come into my room for that.  Doesn't matter if blinds are up, windows open.  Well, this morning she walked over and stood in front of window and sliding door to look at a balloon in her bra!!

It was difficult not to laugh out loud.

Tuesday, September 29, 2015

A New Ted Talk

A new Ted Talk has popped up.  I haven't had a chance to watch it yet but I'll put it here so you can watch it today.  I'll try to watch it tonight.


Monday, September 28, 2015

Depends

Towards the end of last week, Lyn came to Mom and announced that she needed new panties.  She only had one pair left.  Mom had just done Lyn's laundry two days prior to this exchange and was a bit surprised by the rapid decline in available underwear.  She checked Lyn's drawer and found one pair and an unopened package of new panties.  Instead of opening the package and putting them in for the wash, Lyn had just put them in her drawer.

Mom then went to Lyn's laundry basket and found all of the others.  Lyn had changed her underwear each time she changed her clothes (up to three times a day) and some smelled of urine.  Mom had realized that recently she had started to smell traces of urine when they were in the car together.

Mom asked Lyn if she was having little accidents and Lyn denied it.  She was defensive about it.  The evidence was at hand and it was pointless to argue with her.  So, Mom took a different tactic and pointed out that sometimes "when adult women sleep very soundly they may not realize the need to go to the bathroom."  Yes!  Lyn immediately agreed that happens.  It is hard to judge what is just a response to a suggestion and what really isn't.  However, the evidence was at hand that Lyn is starting to have issues with incontenance from time to time.

Mom pointed out that this happens to enough adult women of a certain age that there are commercials for disposable nighttime panties.  Would Lyn be open to trying them?  Yes!  She is very open to trying these nighttime garments and made a point of telling me about them during our Skype conversation yesterday.  Mom had sent me an email about it earlier in the week.  I was glad for that because when Lyn raised the subject, I was able to support Mom's suggestion while making it just a normal part of life.

Friday, September 25, 2015

Recent Drug Developments

The news surrounding Alzheimer's and drugs this month has been very interesting.

Salsalate, a drug related to aspirin, may provide a new hope for Alzheimer's.  The interesting thing is that Salsalate has been known of and in use since the time of Hippocrates.  It's an oldie but a goodie. Salsalate helps reduce inflammation which is why it has been used to treat arthritis.  In at least one mice model, there is evidence that Salsalate clears Tau from their brains.  If that can transition to humans, than that's a good thing.

Alternately, donepezil, which is used to treat Alzheimer's, appears to build bone mass.  Scientists are now looking into using it as a treatment for osteoporosis.  

Finally, a combination drug called dextromethorphan-quinidine appears to reduce aggression and anxiety in Alzheimer's patients.  This is an off-label finding.  Dextromethorphan-quinidine is normally used to treat pseudobulbar affect in which individuals may not be able to have their external emotion expression match their internal emotional feelings.  This finding isn't as surprising to me as the donepezil finding.  Individuals with pseudobulbar affect have some sort of brain damage, injury or neurological disorder which makes emotional regulation difficult.  It is also not an antipsychotic which can pose particular risks for side-effects in Alzheimer's patients.  If it is approved for use in easing Alzheimer's patients' anxiety and aggression, it may be a safer option.

Thursday, September 24, 2015

Mushroom Music

When this picture of Lyn was taken, she was just a few months old.  The mushroom was a music box.  I remember it sitting on the shelf in our room for years.  It was destroyed when the house burnt down.

In this picture, Lyn was whistling.  It was the first time they had been able to grab the camera to get a picture of her doing it.


Tuesday, September 22, 2015

A Toy

On Monday, I received the following email from Mom:

She's watching her new favorite tv program, Family Feud with Steve Harvey.

The question was "What would you hate to discover that your grandma's hiding in her bed stand?"  One woman answered "a sex toy."

"WHAT?  What is that?"  I just said "a toy" and went on with reading.

"That was a dumb thing for her to say cuz grandma doesn't play games."  For some reason I didn't think I needed to say anything more. Now she's concerned that I have "a bad cough."

Friday, September 18, 2015

They Help Me

"They help me."  This is the sole reason Lyn gave for pretending to not see the rug when she and the staff were practicing getting on and off the van.

Why did she want to pretend to not see the rug?  Because the staff helped her.  Because she knew that by pretending to not see it, she could get their attention focused on her a bit longer.  Because she likes being the center of someone's attention.  Because it feels good.

Did the staff know she was being manipulative?  Probably not.  They may not have been watching her face closely or understanding the difference in what her expression was telling them.  Is that their fault?  Not at all.

Humans are adept, even from an early age, of figuring out ways to manipulate each other.  It's just that, for the most part, we teach each other to be more upfront about trying to get each others' attention or having our various needs met.  We teach our children to say "Excuse me.  May I ..." when they want something.  We teach our partners how best to communicate the need for intimacy.  Typically, we favor open and forthright requests and eschew passive aggressive actions.  We get angry when we encounter adults using them.  As the parent of a teen, my current operating theory about why adults and teens find themselves butting heads is because teens prefer passive-aggressive approaches like the side-eye glare or the Eye Roll of Doom which so clearly conveys "Moooom! You're such an imposition upon my very busy texting schedule.  Geez!"  (Not that I've encountered that at all.)

Before we can master the skills needed to present our requests as one adult to another, we use those skills which are closer at hand.  We manipulate.  Are babies manipulative?  That's a controversial topic and I'm not convinced that an infant crying is an attempt to manipulate you.  They have a need and they only know of one way to try to get it met.  However, by the time they become toddlers, they definitely are learning patterns of behavior which are reinforced when they get what they want.  Perhaps instead of always saying "Please" for a cookie, the child has received the positive reinforcement of getting a cookie when they make a particularly appealing expression and use a cute babyish voice.  Perhaps the child gets what they want by throwing a full-blown tantrum until the harried parents give in.  It comes down to learned patterns of behavior which have received positive reinforcement over time.  Heck, even our dogs and cats learn to manipulate us.

Lyn is no different.  She may be intellectually disabled and suffering from Alzheimer's, but she can still seek to control other people around her to her benefit.  I have seen people assume that her disabilities make this type of behavior impossible.  I believe it is a basic skill that the vast majority of us have.  She can be obvious about it like when she says "Those sure are my favorite cookies" as a request.  She can also be subtle about it such as pretending to not see something.  Who's to say she didn't see the rug?  Who would think to question that?

How can you tell if she's being honest with you or trying to manipulate you?  Her eyes give her away.  If she's being honest with you, there's a loss and a dullness in her eyes.  There's confusion there now too.  If she's trying to manipulate the situation, there's a presence, an awareness in her eyes.  She is engaged in the moment and enjoying it.  She may be a bit more charming than usual.  If you're a man, she'll be overtly charming.  Once you know what to look for, it is easy to spot if not glaringly obvious.

What do we do about it?  Well, we try to correct the behavior or point out that she's capable of doing something independently.  We do want her to keep trying because if she relies on others for everything, her disease progression will increase its pace.  I know Mom gets angry with her and even embarrassed.  Mom will got to bat for Lyn in an instant and on many occasions over the years, it has turned out that Lyn was fabricating stories and working herself into a lather over nothing.  She did it at her current day hab, at her previous day hab and even at work when she worked for Wendys.  Mom is embarrassed when this happens because she's tried to protect Lyn only to discover it is Lyn who is causing the trouble.

At this point, we know Lyn needs help.  We know believe the panic attacks are real.  We also know that she enjoys when she's getting the attention and her "They help me" is her motivation.  It is a fine line to walk and trying to navigate that while recognizing that her reality is different than ours complicates things.

Will there come a time when she won't try these behaviors?  Perhaps but she'd have to be non-verbal first.  Grandma was verbal to the end and could still lay it on thick even a week before she passed.




Thursday, September 17, 2015

Manipulation Tactics

Yesterday at day hab, the staff practiced with Lyn getting on and off the van.  Mom had sent along a small, light color rug to serve as a visual taget as Lyn stepped down from the van.  Lyn told the staff she could not see it.  She claimed to see only black.

When Mom got Lyn home, she took a second small rug and held it up, asking Lyn what she saw.  Lyn very clearly saw and desccribed the rug.  Over the course of the evening, Lyn indicated that she had seen the rug at day hab.  She pretended to not see it because she likes when the staff helps her.

She is manipulative. She always has been.

She is having panic attacks and she is genuinely frightened.  However, in a situation she perceives as controlled and safe, she wll work to have the attention on her.  It is a form of feeling valued and connected.  It allows her to feel a sense of control overserself and her environment.

It is also incredibly maddening.  It is hard fo the rest of us who do not live in her reality to have patience with behavior like this.  Grandma was the same way.  She could charm one moment and then spin on a dime to be ugly or vindictive.  Lyn did exactly that  when I was on the phone checking on them.  She was calm until Mom turned the channel on the television at which point Lyn got ugly.  If Lyn follows Grandma's pat of deterioration, she will continue to try to manipulate when she can.

Lyn is taking a rug again tomorrow and they will practice again.  Given today's outbursts, I suspect she will see the run just fine.

Wednesday, September 16, 2015

They are Working on it

The various folks who work with Lyn had an email exchange in which ideas were shared to identify ways to help Lyn feel safer on outings.  Several mitigation strategies have been suggested.


  • Have Lyn wait on the van until everyone is off 
  • Have a staff member escort her off the van while giving her verbal cues
  • Add a contrasting color tape to the van steps to highlight where they are
  • Have a contrasting color mat placed on the ground to give Lyn a visual target to focus on
I believe they are looking to see if adding the contrasting color tape is a possibility.  For the rest of the suggestions, training and practicing will have to take place, but they are workable.  We won't know f any of these suggestions will prove effective.  However, they are worth trying and if any of them help, they may extend her ability to participate in the day hab activities.

One thing that we all need to remember is that Lyn is not trying to give anyone a hard time when she asks for help or melts down.  This is not her trying to just get her own way.  Yes, it can be perceived to be controlling behavior.  She is trying to control her environment so that she can figure out how to safely navigate it.  She is not giving the staff a hard time.  She is having a hard time.

Tuesday, September 15, 2015

Panics in Public

Lyn's been having increasing difficulty in handling day hab outings.

We've known she's not able to process plexiglass at  the mall.  Day hab has been advised that she should not be taken to the mall.  Going even to the first floor causes her anxiety.  The mall was redecorated and a primary decorating element is plexiglass.  Even the stairs are plexiglass.  She cannot see it and her brain cannot process it.  It induces full-blown panic attacks with tears, shakings and an inability or lack of desire to stand.  A recent outing was scheduled to be to a doughnut shop.  At the last minute, a trip to the mall was added.  The staff took her to the second floor and she melted down.  She asked for help and at some point, someone stated that she needed to stop her games.

In a another incident which happened just last week, Lyn started to panic getting out of the day hab van.  She called to the day hab staff three times for assistance and received none and a another full panic attack ensued.  We do not know if the staff did not hear her or chose to not respond.

What is happening to cause these panic attacks?  They don't happen when she's with Mom or her respite care provider.  An email from Lyn's behavior therapist provides good insight.  She writes:

There could multiple issues going on: 
*  transition from on activity to another, and having difficulty with remembering what is next
* the change in lighting leaving the bus into bright lights could not be registering the depth of the stairs
* the commotion of the transition with everyone talking, getting stuff, standing in line waiting to get off the bus, etc.
* difficulty problem solving visual illusion effects (for example, when going downstairs – determining how many steps there are, and where the next one is; going upstairs is not usually a problem) 
The real extent of Lyn's visual difficulties will not be apparent until she experiences a change in environment, like going out shopping, on an outing, or on the van. Visual difficulties and ‘perceived obstacles’ will make Lyn more anxious and fearful. It would be helpful to anticipate situations where Lyn will likely have perceptual difficulties, help explain what is being encountered, offer encouragement and support, and slow down their own movements around Lyn.  When there is a lot of commotion, talking, other people moving around, her brain is not processing this information and she is over whelmed.   
The size of the vehicle (she can't put her foot out and touch the ground while still seated) and the number of people add to the processing confusion which leads to panic.  A hand out and a staff member standing right there would allow Lyn to focus on the staff and see where their feet are in relation to hers.  The staff to client ratio is only 3 clients to 1 staff.  This is not a high ratio and should be adequate to cover Lyn's transition and movement needs.

Mom is actively working with Lyn's team and the supervisors at day hab to address the situation.  

Monday, September 14, 2015

Deciding on Dinner

Mom had promised to take Lyn out on a picnic on Sunday, trying to make up for a tough day at day-hab on Friday.  Mom had planned for the lunch but didn't remember to take something out for dinner before they left.  When they arrived home, they called me so we could Skype.  It was late in the afternoon and I had already put dinner in the oven for my family.

Lyn asked what I had fixed and I had shared with her the meal plan.  I could tell she probably didn't even know what twice-baked potatoes are.  Mom indicated they needed to figure out what to fix.  Without hesitation, I suggested breakfast for dinner.  Lyn made a face than indicated she wasn't thrilled with the idea.

Later, I received an email from Mom.  After our call, Lyn had told her "I don't like breakfast at night but are you allowed to make french toast for me to eat?"  Mom assured her that she could eat french toast at any time, day or night, if that's what she wanted.

Thursday, September 10, 2015

Silverware

Each afternoon, while Mom is preparing dinner, she asks Lyn to set their places.  Lyn collects the silverware from the drawer and gets a napkin for each of them.  She's been doing this small chore for decades.  I remember her doing it when we were kids.

Earlier this week, she told Mom she wanted spaghetti but "I just can't make up my mind."  Mom started cooking the spaghetti and asked Lyn to set their places.  Lyn stood before the drawer, total confusion nearly sending her into a panic.  She didn't know which pieces of silverware to pick from the drawer.  Mom asked Lyn to get one fork and two spoons.  Mom already had a fork and knife on the counter which she would use to cut up Lyn's serving, passing Lyn the fork when being served.  

Once Lyn had the necessary utensils, she placed the fork and spoon at her place and left the spoon for Mom.  Mom asked Lyn to shift the fork to her spot.  Mom tried several times to convey what she wanted to Lyn.  Again, the panic was close to the surface.  Mom walked over and moved the fork herself.

Mom's seen this a time or two over the years but it is happening with increasing frequency.  Lyn's having a harder time recognizing utensils and how they should be used.  While Mom gives her a fork, Lyn mostly resorts to using a spoon.  We've also noticed that she now actively grunts with most bites.  

We will keep asking her to help for as long as she's able to assist.  Every little bit of stimulation is needed to help keep her engaged.

Wednesday, September 9, 2015

End of Summer

Summer is ending and already the quality of the light has changed.  The shadows are a bit more crisp and stretched.  The days are shortening and we anticipate an increase in Lyn's Sundowning symptoms.  Summer is such a nice break from them because the daylight often lasts longer than she does.

She is retreating again into herself.  There are days now when she declares she doesn't want to day hab.  She doesn't know why.  She doesn't have the words to express it.  There are days when she doesn't even want to go out of the house or change out of what she wore to bed the night before.  For now, Mom can still get her to bathe daily and at least change into clean pajamas at the end of the day.

We know that as the summer light dims, she will too.  Each spring sees her less intact than the year before.

Tuesday, September 8, 2015

Tricycle

Here's a sweet picture of Lyn from the summer of 1973.

She loved her tricycle and would ride it around the yard, always ending up at the fence to greet the neighbors should the come out.


Mom passed the picture to me when I was out there last month.

Thursday, September 3, 2015

Uncle Howdy

Howard Morgan was a weatherman in Albuquerque for many years.  He drew a smiley face on the sun each time the graphic was used in his weather displays and named it "Thermo."  He was also Uncle Howdy on a children's television show.  He worked in the Albuquerque marked from 1971 until his retirement in 1999.

Earlier this week, Lyn was watching television when she turned to Mom and asked if Mom knew who Howard Morgan was.  Lyn went on to explain "He used to be on this channel and did the weather.  He would draw circles and put faces on them.  Sometimes, he dressed as a clown."  Howard has been off the air for almost 16 years.  His children's show has been off air much longer.

Something triggered a long buried and rarely used neural pathway in her.  Mom says these random, deep memories happen more frequently these days.  Alzheimer's is a strange place.