Tuesday, March 31, 2015

Day Hab Changes

Over the past several weeks, Mom has noted that Lyn comes out of day hab in one of two moods.  Either the day has gone perfectly and she's happy as can be, or something went wrong and she's ready to explode.  

A happy day is a result of the day hab schedule being kept 100% with no variations.  If they were to go out, they went out to the originally planned location.  

An unhappy day is a result of a number of things such as the weather was too nasty for the originally putting to be kept.  The day could also become a challenge if another client gets into Lyn's face and starts telling her what to do.  There are two women who are known to do this.  The staff will intervene but are not always aware of it.  The day could become a challenge simply because all 40+ clients show up and Lyn becomes over stimulated.  

Unfortunately, the unhappy days are starting to out-number the happy days.  This is a pattern with Lyn and something we witnessed when she was still working and again at her last day hab.  At this point, we pretty clearly see this as originating with her.  Yes, the in-her-face clients are a direct challenge.  However, Lyn is no longer able to let things go.  She doesn't have the mental flexibility to accept a change in schedule or the ability to tell someone to back off.  If there's even a minor disturbance, she's fixating on it.  For example, her period started an hour before Mom was to pick her up one day last week and Lyn hounded a staff member into calling Mom "just to let her know."  There was no accident or soiled clothing to worry about but Lyn couldn't move on until Mom was informed.  

So now what?  Something needs to change because the unhappy days lead to a miserable afternoon for both Lyn and Mom.  Lyn is routinely asking if she can stay home and not go.  The issue really isn't with the staff or the day hab facilities.  The issue is with Lyn and the changes resulting from her Alzheimer's.

One of the two clients who get into into Lyn's face will no longer be attending.  (To be clear, they have not been singling Lyn out.  They just want to be in charge of everyone and everything.  I don't believe this is malicious.  It is just not something with which Lyn can deal.)  A 50% reduction of that tension will help.  

Mom reached out to Lyn's behavioral therapist to get a second opinion of what's happening at day hab and what is needed for Lyn.  The assessment of them both is that perhaps Lyn should attend fewer days of day hab.  Lyn will soon switch to attending day hab three times a week instead of four or five.  Additionally, the therapist conducts her visits with Lyn at day hab and will work with the staff to help them be more aware of Lyn's body language as well.  If they notice she's getting stressed or over stimulated, they may be able to direct her into one of the many spaces designated for quiet activities and out of the busier rooms.  

As Mom and Lyn were telling me this over the weekend, Mom clearly stated several times that this also means there are going to be quiet, at home days.  Lyn should not expect to go out every day that she stays home with Mom.  If they need to go out, they will but Mom's not going to create an excuse to go out every single day.  Lyn surprisingly didn't object to this.

Monday, March 30, 2015

Auditory Follow Up

In the middle of last week, Lyn had a follow up appointment with an ENT regarding the hearing loss in her left ear.  The doctor was kind and really listened.  He checked her ears and reviewed the results of the recent hearing tests.  He also read the notes from the audiologist and Lyn's primary care physician.

While noting that Lyn is intellectually disabled, he was surprised at the diagnosis of early on-set Alzheimer's.  He does not believe the hearing loss is in any way related to Alzheimer's and felt that such a loss would be rare and manifest first in the other ear.  He also does not believe that her hearing loss is the result of a sinus or ear infection and indicated there was no fluid built up behind her ear drum.

He suspects that at some point over the winter she had a virus that led to the hearing loss.  At this point, she doesn't appear to have an active infection which would cause the problem.  She's been treated for the previous sinus and ear infections which were bacterial based and those are fully resolved.  There's really nothing more that can be done.  Her hearing loss may be permanent.

Thursday, March 26, 2015

In the Air

On Saturday, an event was being held at the balloon field on the edge of town.  Lyn and her respite provider decided to go check out the activities.  When they arrived they found several balloons were inflated and tethered.

Lyn was very excited to be up close to the balloon.  The balloon is named "Twist of Fate" and has been piloted by Steve Coffing for years.  I don't normally name folks here, but the balloon is easily recognized and pilots' names are routinely published along with the names of their balloons.  For those of you unfamiliar with ballooning, the balloons are given names much like you name a boat.  Some balloons can be quite famous such as the Double Eagle II, the first balloon to cross the Atlantic Ocean.  (I'll gladly admit that I squealed when I saw the gondola of the Double Eagle II at the Smithsonian's National Air and Space Museum near my home in Virginia. I digress...)

The balloons were tethered and the pilots were giving visitors quick lift up and back down.  Lyn, of course, was game to climb aboard.

She's been in balloons many times over the years and has no hesitation about climbing in or lifting off.  That's what you do, after all!  

And off she went...


Monday, March 23, 2015


Yesterday, Lyn was pretty animated when we Skyped.  It was good to see the happiness and excitement early on.  It later changed to contentious and snotty, but for a bit she was lovely.

She announced that she got to see our brother.  I asked her how that went and was she excited to see him.  Her response made me laugh.

"He was saying lots of swear words.  Those are not appropriated and I do not talk like that!"

Thursday, March 19, 2015


My brother called Mom earlier this week and let her know that he'd be in town for a couple of hours and would like to visit.  He's a long-haul trucker and has rarely been in town since he left home after high school.  Mom jumped at the chance to see him.

After making his delivery, he called and she picked him up from the truck stop.  They came to the house so he could finally see it before they all went out to breakfast.  As he walked in Nikka barked and insisted on inspecting him.  After a few seconds, she decided he was an acceptable guest and wagged so hard she beat him with her tail.  Lyn was a different story, however.

Lyn was indifferent to him.  She didn't want to hug him or even verbally engage with him.  During breakfast, she sat across from him but made no attempt to join the conversation.  Unlike her usual self, she only uttered a few sentences.  When they dropped him back at his semi, she said "Love you" and then said nothing more to or about him all day.

Mom's sure Lyn knew who he was but... she definitely wasn't acting like she really knew him and she wasn't her usual flirty self.

The next morning, while petting Nikka, Lyn commented "I am surprised how good Nikka was with the boys."  Mom asked her "When?"  Lyn responded with "Yesterday."  Mom didn't correct Lyn or point out that Nikka was good with her brother; not the nephews.

A little while later, on the way to day hab, Lyn watched 4 hot air balloons and commented "Boy, they are really high.  It was nice to see (our brother).  Is it cold in that balloon?"  So, the amusing non-sequiter reveals that at some level, she did recognize him.

Wednesday, March 18, 2015

Feeling Lost

Twice last week, Lyn cried in the evening.  The first time, she was unsettled and tired but couldn't articulate why she was crying.  She could only say that she was sad.  That's nothing new and happens frequently enough.  The second time, was a bit different.  This time, she told Mom she felt lost.

"I'm lost.  I don't know where I am."  This was repeated.

Mom assured her that she was was home and safe.  Mom let Nikka jump up on the bed and Nikka leaned into my sister.  As Lyn clung to the dog, Mom told her that Nikka was there and that they were  to take care of her (Lyn).  Mom assured Lyn that she was home because Nikka was there.

We don't know if Lyn believes her but she calmed down.  This sense of being lost is common in the Alzheimer's progression.  It is usually apparent when a person is in the later stages of the disease and may be a precursor to wandering behavior.  If she doesn't realize she's home, she may be inclined to leave and go looking for the place that feels like home to her.

According to the stages defined by the Alzheimer's Association, Lyn's transitioning from stage 5 to stage 6.  She needs help picking out clothes each day.  She can still dress herself.  She's still able to feed and bathe herself.  However, she's now having increasing difficulty identifying where she's at and is unable to recall recent events such as the hearing test which happened last month.  Her symptoms span both stages 5 and 6 which I take to be a period of transition.  This is an  inexact identification though.

Additional Information:

Alzheimer's Association - Staying Safe