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

Swears

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

Indifference

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

Tuesday, March 17, 2015

In Memory of


In memory of Meyera Oberndorf, former mayor of Virginia Beach.  She passed on Friday as a result of Alzheimer's.  Mayor Oberndorf was a lady who genuinely loved her community and made herself as approachable as possible to her constituents.  During my years in Virginia Beach, I had the pleasure to meet her on many occasions.  I always found her to be quick to smile but a political force to be reckoned with there as well.  She was a genuinely lovely person.

In memory of Terry Pratchett, prolific fantasy author.  He stunned his fans when he announced his Alzheimer's diagnosis in 2007.  He went on to campaign for the legalization of assisted suicide though he died of the disease.  He continued to write long after his diagnosis was given.  His work has influenced many and it will be interesting to see if any of his writings from the last few years of his life will be published or if they give any insight into the progression of the disease.

Monday, March 16, 2015

Fear of Falling

Lyn seems to have developed a fear of falling recently.  So far, it seems limited to falling from an upper level of a building to a lower level.  We're not sure the full scope but it seems to be triggered if she's able to see down into the lower levels, particularly if the railing is framing large plexiglass or glass panels which provide you with an unobstructed view down.

This came to our attention last week when the staff at day hab took a group of clients to the mall.  Lyn apparently told the staff that she was uncomfortable as they went upstairs but didn't elaborate on why she was uncomfortable.  Perhaps she was unsure of it herself.  Going into a store didn't calm her down and by the time they arrived downstairs, she was on the verge of tears.

The mall they visited has been renovated with more glass.  Lyn can't see the glass and is convinced there's huge open spaces for her to fall through.

Mom spoke with Lyn's behavior therapist to get her thoughts because that therapist frequently takes Lyn to the same mall when they need to do walking exercises.  She also commented on Lyn's increasing anxiety when they go further into the mall than the first floor.  She had not made the connection that the anxiety was a result of a fear of falling.

Currently, Lyn is refusing to visit the mall again.  Hopefully, the staff can help work her though this and let her just visit the bottom floor because it is a good place for her to walk if the weather is not conducive to being outdoors.

Friday, March 13, 2015

Prepping for the Dentist


Lyn's dental cleaning has been delayed several times recently.  The changes necessitate additional prep work.

The first time it was rescheduled, the hygienist who has worked with her for several years was out that day.  The next reschedule was a result of nine inches of snow that fell the night before the appointment.  In rescheduling, Mom learned that they hygienist who Lyn was most familiar with is gone from the practice.  Had they been able to keep the appointment, Lyn would have had a challenging time because she would not have been able to adjust on the spot to working with someone new.  

For the past two weeks, Mom's been talking with Lyn about working with the new hygienist.  She's gone over the previously written social story to reinforce that the procedure would be the same; just with a new hygienist.  Each day, Lyn asks why she has to work with the new hygienist.  They've been working on her name so that Lyn feels more comfortable.  

The reminder call came in and Mom was informed that the new hygienist was unavailable and Lyn had been scheduled with a third hygienist.  There wasn't enough time to work through that name change.  Mom asked to be rescheduled with the second hygienist at a later date.  

The appointment is now set for Monday and Mom will continue reviewing with Lyn that she'll be seen by the second hygienist.  

Thursday, March 12, 2015

Exercise

In the way into day hab earlier this week, Lyn and Mom were both feeling pretty quiet.  After several miles of silence, Lyn turned to Mom and announced that the next time she speaks to me, she has permission to tell me that they do Zumba at day hab.  She says they do three parts but she doesn't remember what.

I knew they exercised at day hab but didn't know it was Zumba.  From what I understood, it devolved into the Chicken Dance pretty quickly.  Maybe they've moved from the Chicken Dance to Zumba.  Either way, it is movement and that's a good thing.

Wednesday, March 11, 2015

Because There is Beauty

For some reason, the phrase "because there is beauty" has been stuck in my head all day.  Perhaps it is just that the snow is finally starting to melt and the sun is still up during my drive home.  Perhaps it is because of the cardinal I watched defending his realm from the competitors he kept finding in the side mirrors of the cars at the office.  Perhaps it is the result of a day that was sunny and warm enough that the bees could fly, leaving the marks of their passage all over my car.  While no early flowers have yet raised their faces to the sky, Spring is slipping in on dripping wet feet.

Winter finally seems to be letting go and I know that in just a few months, we'll be able to fly out to NM to spend some time with Mom and Lyn.  Lyn knows it too.  She's already started her list of things for us to do in our annual visit.  I'm afraid that her list is already longer than we have days.  That just gives us options from which to choose.

Though work is busy and intense right now and though we still have the last few months of school to get through, I can tell that we're starting to look forward, yearning for the days of summer vacation when we can laugh over a plate of sopapillas or Mom's lasagne.

Tuesday, March 10, 2015

Research Update

There's some interesting research being conducted on Alzheimer's.  Let's get caught up on a little bit of it.

On the way home from work last night, I listened to a story on All Things Considered about how research into prion diseases like Mad Cow has shown a connection to Alzheimer's and Parkinson's.  The researcher indicates this connection may actually allow us to find a way to slow the progression of these diseases by slowing how the prions which are folded incorrectly spread from neuron to neuron.


In another study, it turns out that tau can be found in skin biopsies.  Tau is also problematic in the brains of individuals with Alzheimer's or Parkinson's.  Individuals with Alzheimer's or Parkinson's have seven time higher levels of abnormal tau in their skin biopsies than individuals without one of the diseases.  As a result, a skin biopsy may be a way to detect them before the symptoms reach clinical levels.


Finally, another study indicates that a blood test which evaluates the level of transferrin, the protein which moves iron around the body, may be indicative of a risk for Alzheimer's.  The theory is that if you have too little transferrin, you get a build up of iron which leads to neurological diseases to develop.





Monday, March 9, 2015

She Moved

After several years living next door, the lovely neighbor has moved back to Texas to live with her daughter.  She became a significant part of the lives of Mom and Lyn, frequently joining them on forays into town or when they went out to dinner.  Many times, Lyn would advise the two older ladies that they needed to stay out of trouble.  The lovely neighbor was always kind to Lyn and would quietly giggle or share a look with Mom when Lyn chastised them.  She was an observant lady who saw the changes in Lyn first-hand and recently remarked that they were coming more quickly these days.

During her last week in town, Lyn was particularly down.  She didn't want to go out or do much of anything.  In all honesty, I think she was detaching emotionally.  When the day rolled around for Mom to drop the lovely neighbor at the airport, Lyn didn't even really react when she got out of the car and told Lyn to "Have a good day at day hab" in lieu of a good bye.

As far as I know, Lyn's not mentioned her since she returned to Texas.  The same happened with Lyn's case manager when she returned to Montana.  It seems that they're just gone from her version of the world.  It is kind of sad in one way.  On the other hand, she's not sitting, missing them or being upset that they're not there.

Wednesday, March 4, 2015

Dietary Advice

It is the time of year when I see a couple of my doctors for annual follow-ups.  It is a thrilling time, let me assure you.  I've got a couple of chronic health issues that have to be checked on but that I'm able to manage pretty well on my own.  (Thanks genetics!)  The tests typically come back saying much the same thing each time.  My white blood cell count is stunningly low but within my well documented range.  My thyroid will always need support and the rest of my counts are great... until now.  My weight has always been a challenge for me and carrying the extra load has caught up to me.  I've just, just crossed over into a pre-diabetic state.  So, time to get back to trying to drop some weight.  I've been advised to follow a low carb diet.

When Mom and I speak, Lyn is frequently involved.  She knows that I'm working to loose weight and that my doctor has advised a dietary change.  She knows that I'm planning to schedule time with a nutritionist who can help me balance my needs with my husband's dietary restrictions.  Lyn figured she had the answer for me and decided to dole out her dietary advice.

"Ok.  What you should do is eat this one day and then eat that the next day.  That should work for your husband, too!"

I had to cover my mouth to keep her from seeing me smothering a giggle.  I thanked her for her great advice and assured her I would share it with my husband.

"That's how I lost weight!"

She's lost another four pounds this month without dietary or exercise changes.  I won't tell her that her weight loss is anything other than her "eating this one day and that the next."

Tuesday, March 3, 2015

House Book

If you've been reading DBD for a while, you may remember that Lyn has a "car book."  It is a notebook into which she's pasted pictures of places she's visited or of things that make her feel happy such as a hot air balloon.  She keeps this book in the car and takes it with her if she goes on a day trip with Mom.  When she gets anxious about being on the road or going someplace she cannot remember being before, she looks through the book and it helps her feel more calm.  We've added pictures to it over the years and try to have some pictures of sights which are very similar to a place we may be visiting.

While having this book on hand doesn't prevent her from breaking into tears, it does help and has been a good tool to have on hand.  As a result of this, Lyn is making another book she's calling her "house book."  In this second book, she's collecting pictures of things you would find around a home. For example, she cut a picture of a dining table and chairs from a magazine.

She's now forgetting words to describe objects she sees every day.  It is frustrating her.  The hope with the house book is that she'll flip through the book and point to the object that she's wanting to reference.  Asking her to find the object in the house can be an effort in futility sometimes because she's not sure where to start looking any more.  This leads to anxiety.

I foresee a time when a poster or a similar book will be needed to cover the topic of food.

I'm not sure who thought of the house book.  I think is it a great idea!  If it lets her communicate a little more easily, then the book serves its purpose as a tool.

Monday, March 2, 2015

A Slow Recovery

Lyn stayed home most of last week.  She was struggling to recover from her double ear and sinus infections.  Illness is hard for her to shake these days.  It also makes it difficult for her to think.  This is common when an Alzheimer's patient is sick.  Their skills and processing take a back seat as their bodies work against the illness.  As a result, illness often brings substantial and noticeable differences from which the individual may not recover.

She's listless and not showing interest in things.  Nikka is still lavished with attention but she pretty much ignored our uncle when he came for a visit the other day.  She's not wanted to go to day hab this week.  She's not wanted to go out at all if the weather is even slightly off.

She even forgot she had more than one set of pajamas.  She came into the living room wearing a pair of pajamas she had worn for a full day.  When Mom suggested she change into clean clothes, Lyn commented that she had forgotten she had more.

As she recovers, she may perk up a bit.  Let's hope.