Tuesday, September 30, 2014

Velcro

In case you were wondering, and I know you were, Nikka is made of velcro.


When Lyn came home from day hab, Nikka greeted her by spinning around the room.  This is her normal approach to greeting my sister.  Lyn sat down and the velcro between them took hold.  They stayed like this for over a half hour.  

Lyn may not be smiling, but she is thrilled by Nikka's response to her and just adores the dog.  It is a good thing because the feeling is so clearly mutual.


Monday, September 29, 2014

Your Correspondent

"We're Entering the Age of Alzheimer's" is an article that crawled across my desk just last week.  It was published earlier in the month.  The article combines a personal account from the perspective of the author who refers to himself as "your correspondent" along with the statistics surrounding Alzheimer's and the anticipated impact it will have on the human population.

It is a tough article to read for a number of reasons.  There are times when I want to argue with the author's word choice, but I can't.  Despite my role in Lyn's care, I don't have the direct, extended one-on-one care experience to quibble with his words.  The author's points are salient and across to me as brutal honesty; not an attempt to offend or belittle.  That being said, the article is well worth reading.

Friday, September 26, 2014

Justin Has Passed

At the end of August, we learned about Justin, an individual with Down's Syndrome who was participating in an Alzheimer's study.  I was saddened last night to learn that Justin had passed away in his sleep this week.

May he be remembered well and with love.

Thursday, September 25, 2014

A Can and A Dog

Lyn wanted to show her craft project from day hab.  It is a dog on a can.  She's very pleased with it.


Lyn wanted to share with me the instructions for how to make one of these.  They are as follows:

1. You need a purple can.
2. You need someone to use a hot glue gun.
3.  If you have that then you can make one too.

I don't know why the can has to be purple but she insists.

Wednesday, September 24, 2014

Loosing Weight

Lyn's weight has been high for years.  We all struggle with our weight.  Mom convinced Lyn to make some small changes such as having no more than one soda a day and she lost some weight.  We've praised her lavishly for being able to loose some weight.  However, the weight loss has increased and we think it is not about dietary or exercise changes.  We think it is the Alzheimer's.

Weight loss is actually associated with Alzheimer's.  This association has been known of since at least the late 1990s when a study reveals that weight loss "is a predictor of mortality" for Alzheimer's patients and that the "risk of weight loss tends to increase with severity and progression" of the disease.  Two years later, there were several hypothesis for why the patients shed weight but no definitive answers.  A study released this year indicates that the build up of amyloid-beta interferes with the hypothalamus's ability to respond to the hormone leptin.

Lyn's visit to the doctor for the current infection indicates that she's lost 7 lbs since her last visit 2 weeks ago.  Prior to that, I believe the weight loss from her physical in August indicated 12 lbs lost.  In short, she's lost 19 lbs in under 2 months.  The soda reduction was months ago.  She's not exercising more either.  Her appetite has dropped noticeably however and that is also part of the disease.

Mom and I are concerned because the weight dropping quickly can increase the chances of Lyn taking a fall.  It also reduces the body's ability to fight infections.

Tuesday, September 23, 2014

Updating the Diagnosis

When Lyn was first undergoing the process to diagnose what is happening to her, the physician listed the diagnosis as early on-set dementia.  Mom has been thinking about this diagnosis for some time and feels that it is too broad.  Dementia is the collection of symptoms resulting from a number of degenerative neurological conditions.  The list of dementia causing conditions includes Parkinson Disease, Vascular Dementia, Fronto-temporal Dementia, Dementia with Lewy Bodies and Alzheimer's.

Graphic courtesy of the Alzheimer's Organization Alz.org

Lyn's symptoms match Alzheimer's; not any of the others.  Even the last evaluation from a neurologist is in agreement.  As a result, Mom asked Lyn's physician to change the diagnosis from dementia to Alzheimer's.  Her physician thought about it for a few minutes and then agreed, making the change right then.

This really doesn't change anything about Lyn's care.  It just makes the diagnosis as specific and as accurate as possible so that the whole team can speak to the real situation at hand.

Monday, September 22, 2014

A Tough Weekend

On Friday, Lyn came down with a massive sinus infection and another ear infection.  The previous infection just two weeks ago had been cleared up and this is in her other ear.  It amazes us how quickly the infections hit her these days.  I really wonder if she's just not aware of the infection building.

She wasn't up for going to day hab and needed to be seen by her doctor that day.  Mom got her in to be seen.  The diagnosis was confirmed and a prescription was ordered.  By the time that Mom got them home, Lyn was ready to fold up.  She did and slept several hours.

Mom has kept Lyn home all weekend and Lyn's spent the weekend sleeping.  Despite being on the needed medication, Lyn's not bouncing back and it looks like she's not going to be up to going to day hab tomorrow.  She's been sleeping until almost 8 each morning, napping from 9 am until at least 11 am, barely eating a lunch and then napping again for several more hours in the afternoon.  She's up for only an hour or two and then bathes and returns to bed for the night.  Mom has commented that Lyn's sleeping on a similar schedule to how she slept as an infant.  Neither of us can recall a time when she's slept more than she's been awake.

Mom cancelled Lyn's speech therapy session for today.   As of Sunday night, she wasn't really showing much improvement and Mom decided to get her seen again by the doctor today.  Hopefully, she'll be back on her feet in a day or two.

Friday, September 19, 2014

Happy

Some days, you get a song in your head and it just won't leave.  When Mom sent me the picture of Lyn after day hab, I heard Pharrell's much played song "Happy" and I wanted to dance with her.


One of the staff at day hab had curled her hair and pulled it into an up-do for her.  She was delighted as you can see.

So, since it is Friday and she's happy, I suggest we all dance and enjoy a moment of happiness.  To that end, I share with you my favorite video set to Pharrell's song.  I hope you enjoy it.  I love it.


Happy Friday!

Thursday, September 18, 2014

Not Big Hungry

Lyn's verbal skills have slipped since I saw her just last month.  She's transposing words more frequently.  She knows what she's wanting to say and the words she's saying make sense to her.  However, it is taking a few minutes to figure out what she means more.

Earlier this week, she announced she was ready for dinner by saying "I'm getting hungry but not big hungry."  When she was finished, she stated "I done eaten finish all."  Mom tries to not openly laugh because it upsets Lyn but sometimes, her speech pattern is amusing.

During an episode of Maury, she said very emphatically "That's totally inappropriated!"  Mom struggled to not laugh at that one.

When she was 7, she was only about 2 years into verbal communication and she did much the same thing.  I remember serving as her interpreter whenever we were together which was constantly unless we were in school.  Even Mom needed me to translate.  Now, I suspect Mom will have to translate for me because she's with Lyn much more than anyone else.

Wednesday, September 17, 2014

Changing TV Habits

Lyn's television viewing seems to be changing.  Mom and I are a bit amused and a bit confused by it.

Lyn has long watched Wheel of Fortune, Jeopardy and PBR.  She doesn't watch PBR much any more.      She also has long watched Cops.  I never realized before, but I think she likes the tension and drama. Her newest television favorite is The Maury Povich Show.  She now asks Mom if they can watch the show because she wants "to see if he's the baby daddy."

She watches and comments on the guests' attire.  She doesn't approve of the big earrings or revealing clothing.  She comments on the fighting.  She disapproves of fighting and bad words.  She comments on the twerking.  She disapproves of it too.

She cannot keep track of the relationships or the drama being explained.  Mom sees her expression go slack when the people are seated and talking.  She just responds to the high action and drama.  I think that's also why she continues watching Cops.  She doesn't have to follow a plot; just provide color commentary to the action.

We don't know how she's come to know of the Maury show.  However, it makes us laugh that she enjoys it.

Tuesday, September 16, 2014

Fair Encounters

Lyn had a great day at her new day hab.  She was greeted by name when she arrived and threw her hand over her shoulder in a backward wave to Mom, dismissing her.

They went to the State Fair.  While they were near an ice cream vendor, the staff jumped up and physically interposed between Lyn and a man who came out of the crowd to talk to her and attempted to hug her.  It took a moment to sort things out to the staff's comfort.  It turned out the man was our Uncle, Lyn's Godfather and he was with one of our cousins.  The staff don't know him and he didn't think to introduce himself to them.  Knowing him, he spotted her and just came up to visit with her.  Once the relationship was clarified, the staff relaxed a bit but kept a wary eye on him until he and our cousin said their good byes and headed off.

I have to laugh over the images this story caused in my mind.  I can see him doing this and not realizing that he should probably set a bit of context for the people around Lyn first.  He loves Lyn and would think nothing of popping over to hug her anytime he sees her.  He is a tall, weather-worn man who can be a bit gruff sometimes.  The staff was completely right to try to protect Lyn from someone they didn't know or recognize as safe or acceptable.

As they walked around some more, Lyn ran into a group from her previous day hab.  The two groups recognized each other and the previous day hab staff greeted Lyn by name.  One even hugged her.  None asked her questions or did anything that made her upset.  The encounter was very brief as well.

When Mom picked Lyn up, she was bubbly and excited.  She had a great day and the encounters added to the excitement of the day for her.  She is looking forward to tomorrow.

Moving Lyn was the right decision and it looks like this facility is a great match for her needs.

Monday, September 15, 2014

New Day at a New Day Hab

Lyn starts with her new day hab today.  She is very excited!

She will have a busy day meeting new people.  Both the staff and the clients are mostly new to her.  Lyn may not remember it, but some of the clients are people that she has previously known from Special Olympics or school.  New dynamics will have to be worked out as Lyn settles into a new routine.

Her first day is looking to be a good one because she will have a trip to the State Fair.  Tomorrow, she'll participate in a cooking class.  She likes the schedule that the staff has provided and that it is set for a full month.  She's consulted it many times already and knows that the day's activity will not be changed out on her as a result of someone's whim.

Mom feels as though a weight has been lifted.  The change in day hab won't stop the tears that are a natural part of Alzheimer's.  However, we believe the staff won't be instigating them either.  That alone is a huge and positive change.

Tonight, I'll check on them and see if the day went as well as we hope.

Friday, September 12, 2014

Pie Town or Bust

Yesterday, Mom and Lyn drove out to Pie Town in search of Pie.

To get there, you drive South of Albuquerque about an hour and hang a right at Socorro (not a left at Albuquerque as Bugs advises) and drive straight for another good while.  You'll pass the Very Large Array (VLA) and know you still have a ways to go.


Each of those radio telescopes are 80 feet tall and their tracks form a Y that is 13 miles long in each direction from the center.   There's not much on the San Augustin plain other  than antelope and the VLA installation.

So, you'll keep driving until encounter a gas station, grocery store and cafe all wrapped up in one.  Chances are, you'll be in Datil which is 15 miles East of Pie Town.  Because you're so far from buildings and have been driving for so long now, you'll stop to confirm this fact with a local to ease the anxiety of your traveling companion who has Alzheimer's.  Assured that you're on the right road, you'll strike out from Datil on the last leg of the journey and pull up in front of the Pie-o-neer where you had planned to stop for lunch and, of course, pie.


If you time it just right, like Mom did, you can pull up in town and discover every business, including the cafes closed.  It was noon on an early September Thursday and not a person was to be seen or a business open.  Well, the Post Office was the only thing open but I don't think that counts as a business.  It turns out that Pie Town shuts down for a day or two in preparation for their annual Pie Town Festival which happens on the second Saturday of each September.  They all go home to bake pies.

Fortunately, your traveling companion is assured that the cafe back in Datil is open and you turn your car around.  They serve pie in Datil too and it is pretty good.


One of these days, Mom will succeed in having pie in Pie Town.

Thursday, September 11, 2014

An Unscheduled Vacation

Lyn is having a bit of an unscheduled this week.  Because she's transitioning between day hab programs, she and Mom are finding fun ways to spend their days.  Yesterday they went to Santa Fe.  Today they are going to Pie Town.

When Lyn goes to Santa Fe, the whole point in her mind is to visit the outlet mall.  So that's what they did.  Most of the shops are closed.  Hopefully they'll get new shops in and not have to close up.  Lyn picked out a green hoodie at the Nike store.  At the kitchen store, she just wanted from item to item saying "Look at this.  Look at this."  She was overwhelmed by everything that she saw.

She then wanted to look at the purses at the Coach shop.  Mom was overwhelmed by every price she saw.  Mom suggested that if Lyn needs a new purse they can go to Target.  Lyn gave her The Look.  (I can't say I blame Lyn for giving The Look this time, but I understand Mom's hesitation for buying expensive purses.)

When Lyn asked if it was time for lunch, Mom suggested they visit the Plaza Cafe where we had lunch last month during our visit.  Lyn was fine with that.  She'd gone shopping and that's all that she cared about.  Mom was determined to get more prickly pear lemonade and I don't blame her for that either.  It is delicious and the cafe has the best coconut cream pie I've ever tasted.

Ok... Now I'm envious of their day trip.  I'm not sure I want to hear about their trip today.  They're going to Pie Town to have pie.

Hopefully today is as good as yesterday.

Tuesday, September 9, 2014

We're Out

The tour of the new day hab facility was a great success.  The program approach is completely different than where Lyn has been going and it shows.

A single schedule is created once a month for the entire client group.  Clients can sign up for the communities they want to attend and pre-pay the activity fees.  The staff will then manage the funds and pay for the attendees so that none are confused or stressed by having to sort funds at the venue.  Those who do not go to the community activity have activity options in the day hab facility.  They can work on a craft or reading in a quiet room.  They can watch a G-rated movie in the entertainment room.  They can have supervised exercise in the designated room.

They host classes to stimulate and engage the clients.  One week, it may be a cooking class of simple items which don't require a stove or oven.  One week may have an acting class.  They have a daily exercise class which usually devolves into a vigorous round of the Chicken Dance because that's what the clients enjoy.  Mom agrees with the staff that the Chicken Dance counts as exercise.

The staff have experience with Alzheimer's patients.  In the first year of this blog, I mentioned a fellow Special Olympian who used to bowl with Lyn and had developed early on-set Alzheimer's in connection with Down Syndrome.  This individual attends the day hab.  How the person was greeted upon arrival in front of Mom made Mom tear up.  There was genuine care and compassion.  The staff explained that this client now alternates between singing "Happy Birthday" and crying and they were comfortable working at the client's level.

Mom signed a Freedom of Choice form with Lyn's new case manager.  They are hoping to handle the transition over the course of this week so that Lyn can start next week.

Lyn is not going back to her original day hab after today.  In front of Mom, employee B just got up and walked around Lyn when Lyn approached and said B's name.  B wouldn't even look at her.  While Lyn was upset by this, Mom told her to just ignore B because it was time to go.  Mom used Lyn's excitement over the new day hab to distract her from the insulting response from B.

Lyn will never have to see B again.

Monday, September 8, 2014

Day Hab Issues

For the past several months, Lyn has been having some issues with day hab.

Lyn works best with one worker we'll refer to A for this post.  A is compassionate and really attempts to work with Lyn.  A and Lyn will work together to lay out a schedule for the week or the month that Lyn can refer to as an aid to reducing confusion and anxiety.  Due to A's life situation, there are additional demands on A's time and she's not always at day hab.  When A's not there, day hab employee B will cover for A.

B is the relative of the owner and appears to just be filling a position.  B will chastise Lyn for not signing in or out when she arrives or departs.  B will not address the topic with Mom who would be the one to sign Lyn in or out.  B routinely refuses to honor the schedule and will tell Lyn "I just don't want to."  If Lyn doesn't want to do what B wants, B chastises her which upsets Lyn.  The day hab policy is stated that it is the client's choice and if the client doesn't want to do something or go somewhere, there's enough staff to accommodate the client's desires.

Repeated attempts to resolve the issues have failed.  The owner of the facility paid lip service, saying that they "...understand the Ald-himer mind..." and that "...(day hab) accommodates the client's needs."  The owner denied that there was any cause for concern and claimed that Lyn was learning new skills weekly.  He also stated that Lyn's behavior at day hab was very different than what Lyn's behavior is at home.

Nothing has changes and B is escalating her actions towards Lyn.  When B is in charge of Lyn's care, Lyn comes home in tears.  She's now actively asking to stay home if she thinks that it is a B day.  Mom has decided that sending Lyn on those days is not worth the agony.  Lyn is now only going on days they can confirm that A will be there.  Lyn does not need this treatment at all; none of the clients do.

Today, Mom and Lyn will visit another day hab facility.  This one is owned by the agency which provides Lyn with her case management team.  Hopefully, it will be a good fit and Lyn will transition there.

Friday, September 5, 2014

Team Changes

In this month's team meeting, Lyn's case manager broke the news that she's returning to her home state and introduced Lyn to the new case manager.  Lyn's reaction was nothing we've ever seen before.

Lyn just nodded.  When Mom commented with a "Boy, she'll be cold up there", Lyn just agreed that it is cold in MT.  There was no other reaction and has been none the rest of the week.  We don't know if Lyn understands, but through out the meeting, her face kept going blank.  She was physically in the room but not mentally there.

This month's meeting is the last time that Lyn will see her original case manager.  She made no farewell.  We anticipated tears and confusion.  We, of course, will support her if she does grieve the loss of a familiar face.  I'm not sure we'll experience it though.  I'm not sure she can process the change.

We will see what happens with next month's team meeting.

Thursday, September 4, 2014

A Visit to the BioPark

On Monday, Mom took Lyn and a couple of cousins to the BioPark there in town.  Lyn wasn't feeling her best because of the ear infection, but she was patient and accommodating to their company.

She took full advantage of each bench that was available and would quietly sit and wait for them to move to the next lovely thing to look at when they were in the gardens.  She enjoyed watching the butterflies but the plants really don't excite her.


When they entered the aquarium, Mom grew a little concerned about how Lyn would handle the darkened ramps through parts of the exhibit.  Lyn's good day was in full effect and she was able to navigate them without anxiety or real hesitation.  She was present mentally and looked at each exhibit, pointing out fish that she liked.  However, Mom noted that she'd disconnect and wait for their little group to move forward fairly quickly.

I suspect our little cousin was a distraction to her and that she enjoyed watching the child as much as the fish.  The child had never been to the BioPark before and wanted to see everything all at once due to excitement.  Lyn was patient and quiet, allowing the visit to progress peacefully.  By the end, she was worn out.  They hadn't planned to go anywhere else and returned home so Lyn could nap.

Wednesday, September 3, 2014

The Ears Have It

On Sunday, Lyn started off the day well and then suddenly put her head against a wall and started crying.  "I just hurt" she sobbed.  Mom asked a few quick questions and assessed Lyn's behavior and responses.  She determined it was time to get Lyn to a doctor.  Lyn's physician's office was closed for the long weekend and Mom knew she'd be lucky to get Lyn in first thing Tuesday morning.  That was too long of a wait.  Off they went to urgent care.

Once they were checked in and seated in an exam room, a doctor came in and reviewed Lyn's symptoms verbally.  "I think she's just got a cold." He advised Mom while showing reluctance to go much further.  Mom explained that Lyn gets a different set of symptoms when get gets a cold and those include a fever.  She wasn't running a fever and everything Mom was observing indicated to her that Lyn was struggling with either a sinus infection or an ear infection.  Both can hit her hard and fast because she doesn't recognize when she's starting to feel poorly; just when it is really bad.

The doctor listened to Mom's counter points and moved forward to examine Lyn.  He started with the usual and listened to her lungs and heart.  He then checked her throat and up her nose.  He stopped when he got to her ears.  She has an ear infection again.  He acknowledged that Mom was "on top of things" and knew what she was observing.

Lyn's now on an antibiotic to help her fight the infection.  She's allergic to amoxicillin and the doctor didn't contest the request to make sure the drug he prescribed wouldn't cause an allergic reaction in her.  After the visit with the doctor, Mom and Lyn returned home where Lyn slept through the rest of the day.  She's on the mend and was able to walk around the bio park the next day for a while.