Thursday, October 31, 2013

Passing Out Candy is Serious Business

When Lyn got too old to go trick-or-treating, she turned to handing out candy when neighborhood kids came to the door on Halloween.  Lyn loves the social nature of Halloween.  You get to visit people and they give you candy; what's not to like?

She hands out candy to this day.  She takes the responsibility very seriously and used to correct me when she thought I was doing it wrong.  We differ in our approaches, you see.  She'll pick out a couple of pieces for each person, making sure they don't get two of the same thing while guaranteeing that they only receive 3 pieces.  I reach into the bowl and grab a handful to just drop in the waiting child's bag.  Lyn's been known to remind children to use their manners and say "Thank you."  (That one gets me giggling every time.)  I am fairly quick with my "There you go. NEXT!" approach.


She will continue to greet kids at the door each Halloween for as long as she's able.  I suspect that one day, I'll become that neighbor who takes the self-service approach.  I'll leave a bowl on the step with a note.  Mine won't say "Please take one."  It will say "Just leave the bowl behind."  Lyn would tell me of the importance of greeting each trick-or-treater if she knew I contemplated this approach.

Let's not tell her.

Wednesday, October 30, 2013

Is This The Start?


Last week, when Mom arrived to pick Lyn up from day hab, the staff asked to speak to Mom in the office without Lyn.  They had to advise Mom that a report was necessary due to a significant "change in behavior."  Lyn got aggressive with another client.  

The other client doesn't like to speak and the team works to encourage him to use his words.  They had just succeeded in getting him to sing into a toy microphone.  Afterwards, everyone laughed and clapped for him and he began to sing again.  The staff stepped into the other room and Lyn took that moment to make her move.  She jumped up, got into his face and screamed "Shut up!  Shut up now!"  He kept singing and the staff came at a run.  Lyn stormed off to the restroom in tears.  

We don't know if she was angry that another person was the center of attention.  We don't know if something else caused her to feel confusion or threatened.  However, the staff was right to intervene immediately to protect the other client.  While Lyn did not strike him, her outburst was out of character. Normally, she would have been unhappy and then complained about it to Mom on the way home.

Lyn's internal governor is failing and seems to be failing quickly.  This incident has been documented by day hab and is being included in the reports to Lyn's case managers.  It will also be documented with her physician.  Mom and I are actively discussing the need to medicate Lyn.  It is looking more and more like mood stabilizers are in need.  Her physician disagreed the last time they met.  However, this incident or another like it before their next quarterly appointment may be the tipping point.

Tuesday, October 29, 2013

Aggression in Alzheimer's


Aggression can arise in the middle stages of Alzheimer's Disease.  It can be abusive language or even take the form of physical violence.  It can happen suddenly and seem unprovoked.  It can be frightening to the care provider as much as it it is to the Alzheimer's patient.

First, a reminder:  This is the disease talking.  If the behavior seems out of character for the Alzheimer's patient; it is.  Just remember that their brain is being actively damaged and that damage will manifest itself in unexpected ways.  

Second, a caution:  Seek help if an Alzheimer's patient you are with or caring for becomes violent.  No care provider needs to just accept a beating from an Alzheimer's patient just because it is the disease talking.  The care provider deserves safety and an environment without fear.  Honestly, it is OK to call the police if an Alzheimer's patient hits you.

The Alzheimer's patient that becomes aggressive or violent needs to be evaluated by professionals experienced with Alzheimer's care.  The patient's aggression may be a result of unmitigated physical pain such as from a urinary tract infection.  The aggression may be an indicator that the person needs mood stabilizing medications to help them feel calmer or safer.  Even if a specific cause is not found, steps can be taken to make the patient more at ease and that helps increase safety for the care provider.

Additional Information:

Friday, October 25, 2013

Out Past Curfew

I called Mom's to check on them tonight and there was no answer.  The phone went to voicemail.

This is a little out of the norm, but not too unusual.  It is Thursday which means that Mom may have had to fill in for the respite provider and take Lyn bowling.  This in turn means that Lyn probably convinced Mom that they had to go out to dinner afterwards.  Somewhere in the back of my memory, I think I remember Mom saying their respite provider was not available tonight.

When nights like this happen, I leave a message that I'm checking up on them while they're galavanting about town.  I could call her cell, but I don't like to disturb them while they're out.  When Mom calls me back, she'll laughingly accuse me of keeping tabs on her.  Mom doesn't need to account for her time to me.  She may have to account for Lyn's time as well as her own to the State, but not me.  Lyn does that for me since she will now tell you anything she remembers.  (No skeletons closeted here.)

Our conversations are about routine things like what happened to them today or what is going on with my children.  They provide a lifeline and a sense of normalcy when each day is an adjustment to a new normal.

Thursday, October 24, 2013

Crunchy or Creamy

It has been known for at least 20 years that Alzheimer's Disease damages your ability to smell early on in the course of the disease.  Ten years ago, a list of 10 scents were identified as significant indicators that a person would end up with Alzheimer's if the person was unable to smell them.  This month, a new test has been made known to the public in which peanut butter helps to confirm an Alzheimer's diagnosis.

Peanut butter was chosen because it is a pure odorant meaning that it triggers just the olfactory bulb and not other closely associated nerves.  It is also cheap, easily identified and readily available.  Peanut butter has a unique scent while others may be misidentified as a related scent.  For example, you might think a lemon was a lime.

The test checks to see if a person can smell the peanut butter at the same distance through their left nostril as they can through their right nostril.  That's it.  Pretty simple.  The findings indicate that if you cannot smell the peanut butter through your left nostril or have to be much closer to it than when you smell it with your right nostril, you may have Alzheimer's.  If you can smell it more easily with your left than your right or if you smell it equally well in both, then you may not need to worry about Alzheimer's.  You may have something else going on; just not Alzheimer's.

I've been reading about the test and all the excitement over it for a week now and, against the standard Mythbuster type warnings of "Do not try what you're about to see at home", I tried it.  (Did you honestly expect anything different from me?  I've got Theo Gray's Mad Science: Experiments You Can Do at Home - But Probably Shouldn't sitting on my dining table right now, after all.)

I'm happy to report that as of this writing, I can smell peanut butter a mile a way.  Take a lid off and the smell of it fills a room for me.  Then again, I'm not the target demographic for the test and just did it out of curiosity.  Before you ask... No.  I'm not planning to ask Lyn to participate in the test.  She'll well beyond the early stages of Alzheimer's and I'm not sure she can understand what I would be asking of her.



Wednesday, October 23, 2013

A Typical Ballooning Morning

What do you do on a beautiful morning when you're out to enjoy the balloons?





You hug a giraffe, of course!

Tuesday, October 22, 2013

Winding Down

Lyn is winding down and turning in on herself.


You can see the vacancy a bit in her eyes in this picture.  This is part of the progression of the early on-set Alzheimer's.

She cries nearly daily.  Even speaking with me on the phone will trigger tears.  She still attempts puzzles.  However, she now works puzzles with few, large format pieces.  She actually ate chicken and dumplings recently, having forgotten she didn't like it.

Picking out clothing requires assistance nearly daily now.  She is unable to make a decision about what to wear.  Because she has so many shirts, Mom has decided to move half to the other bedroom.  The thought is that a smaller selection may be easier on her.  It hasn't made a difference and Lyn hasn't missed any of the shirts she doesn't see.  She is currently cycling through a couple of favorite shirts and has pretty much forgotten the rest exist.

If you ask her what she did today, you will most likely get "I don't remember.  I'm sorry." as the response.  If she doesn't remember, it means the day went smoothly and nothing upset her significantly. Negative memories are easier to remember and, as a result, something that is upsetting to her will be fretted over for many hours.

Lyn has completely discontinued Friday evenings out with her respite provider.  She states that "It is just too much."  So, respite is now down to bowling on Thursday afternoons and 4 hours during the middle of the day on Saturdays.  Even this is leaving her exhausted.

On Sunday, when we spoke, they talked about visiting Tim's Place for a late breakfast after getting their flu vaccines.  Lyn started talking about not wanting a big meal because she's just not hungry any more. Then both Mom and I about had our eyes pop when Lyn suggested that they just skip going out to eat completely.  Lyn wrapped up by saying she'll decide that day.

As her brain changes, I think she's disconnecting from her environment.  There will come a time when she no longer engages at all.




Monday, October 21, 2013

An Unexpected Hiccup

I apologize for the interruption in blogging last week.

I had a business trip to Chicago.  While I took my tablet with me to blog on the road, I found my self too tired at the end of the last two days of the trip to put a single coherent sentence together.  I had spent those days in client interviews as part of a larger  requirements elicitation process.  It doesn't sound too bad when I say it that way.  The reality is that we were sitting in a conference room without windows from 7:30 am until the last client left at nearly 6 pm with a short break for lunch.  During that time, we asked questions about the client's business processes and captured as much of what they explained as possible.  After dinner and prep for the next day, my brain was drained.  Blogging suddenly felt BIG and daunting.  As a result, I didn't post for Thursday or Friday.

Blogging is a hobby for me.  It is a way to tell Lyn's story as well as share information about Alzheimer's with Mom and with you, dear readers.  Normally, I prefer to have a couple of posts queued up when I have to travel to minimize the impact on the blog.  This trip didn't see me so organized.  While blogging is very important to me, it is not my number one priority.    Sometimes, crawling into bed and sleeping rates higher in my hierarchy of needs.

So, let's just agree that this will be the last time I apologize for missing a post or two.  I want to give you  posts with thought and care behind them.  I also want to maintain some blog/life balance.  If I miss a post, I am giving myself permission to not feel guilty or like I've let you down.  You have never made me feel that way so there's no reason for me to inflict that upon myself.

Thank you for your patience and understanding.

Wednesday, October 16, 2013

Daily Journal

One of the tools Lyn's speech therapist is using with Lyn is a daily Journal.  Lyn's task each day is to write down what she did.  She does not have to write a sentence; much less a paragraph.  She is just to write down the name of the place or activity.  Today, for example, she would write "day hab."  It may come out as "DAHYB."

Each page has a set of pictograms to represent her different activities.  Each image is followed by the title.  She has been struggling to look at the bottom of the page, identify the word she wants and copy it to the line where she needs to log her activity.  This task was devised for her in recognition of her nearly lifelong practice of copying words that she wanted to write.  Mom or a teacher could write down a special greeting that Lyn dictated for her to copy when she made a birthday or get well card. Today, she struggles to even identify the letters or keep her place in the word.  She struggles to remember what she did from one day to the next more often.

Her therapist thinks it may be time to break this activity down more and make it easier on Lyn.  As a result, she may be switching to a board with pictures on Velcro.  It may be easier for her to select the picture without the added confusion of writing the words.  The goal is to try to engage her at a level she finds challenging but not so frustrating that she gives up. 

Tuesday, October 15, 2013

Competition Quandry

State games are in two weeks for bowling withnSpecial Olympics.  Lyn will, of course, compete.

Mom reminded me the other day that Lyn has been competing in Special Olympics since she was eight years old.  Sometimes, I think she was six; but that is because I am remembering that time from my perspective and I was six.  Lyn is 42 and has competed in one sport or another for 34 years.

She has met so many friends through Special Olympics.  They have been fellow athletes, coaches and volunteers.  They have really enriched her life and helped her achieve more than ever expected.  When you don't put limitations on a person, you allow them the room to grow to their potential.

As a parent, that is sometimes a hard concept to remember and practice, especially if you feel the need to protect a person or are faced with recognizing very real limitations.  On the news last night, there was a story of a young man with Muscular Dystrophy who finished the Chicago Marathon 17 hours after he started.  He set a goal for himself and achieved it with a host of people cheering him on.

I look at stories like that and find them deeply inspirational.  However... You knew there was a "however", right?  Lyn's reality is ever changing.  She is increasingly unstable and her vision is fading.  The Alzheimer's is winning bit by bit and the competition is over stimulating and confusing her.  Perhaps, it is time for Lyn to retire from Special Olympics.  Perhaps, it is time to transition to bowling just for fun.

Monday, October 14, 2013

Blue Ribbon

Lyn had Regional Special Olympics bowling very early on Sunday morning.  She did an excellent job!

The highest score Mom saw during the competition was a 201.

Lyn's bowling was unsteady and her first game was a score of 100.  The second score of the day was 159.  The third score was a 97.  The third game resulted in everyone's scores dropping quite a bit because they're used to only playing two games in a day.  The second score earned her a blue ribbon for First place for her lane.  

During the second game, Lyn got a strike and everyone clapped for her.  She spun around and yelled "I LOVE this game!"  Parents were doubled over laughing as a result.  In a couple of weeks, the State games will be held and Lyn's ready to go!


Friday, October 11, 2013

A Cautious Hope

Monthly, I read articles about research findings which may lead to a treatment for Alzheimer's disease.  Could even 25% of the research lead to a treatment?  It is highly unlikely.  However, the research is necessary because we won't know the right research path until we find a successful treatment.

This week, the results of a study were announced.  The study shows, for the first time, that the progress of a degenerative neurological disease was halted in a set of mice.  This fact alone makes this study of particular note.  The approach was to keep the brain cells producing proteins instead of letting them shut down in an attempt to prevent the spread of a virus.  By continuing production, the cells did not starve themselves to death from being shut down for too long.  I am grossly oversimplifying my paraphrase but the article linked above does good job of explaining.

Does this mean that a cure is around the corner?  No.  It means that one disease was kept from progressing in the mice.  It also means that scientists have one more piece of an extremely complex puzzle and a cautious hope that it will be a key to finding a treatment effective on humans.

Thursday, October 10, 2013

Excitement

For a variety of reasons, my family and I are not traveling to my in-laws for Thanksgiving this year.  It happens every few years.  Knowinng we will be in town and I have available vacation days, I asked  Mom if she and Lyn would like to come join us for Thanksgiving.  

We discussed the challenges of traveling with Lyn, of her potential for tears and confusion, of going through security and working with the TSA agents to keep things calm for Lyn.  Lyn is going to cry no matter what happens.  Crying is a near daily event in her own home now so crying here is really no different.  She is going to experience confusion as she does more now in her own environment.  Going through security will require patience and a running dialogue of what she needs to anticipate next.  Documentation can be made available to TSA if they question Mom's statement of  "She has dementia."  After all this, I said that if it was too much, tell me and will fly out to spend a week with them.  Mom said "We are coming."

They have purchased their tickets.  I will be arranging a portable oxygen condenser to be on-hand for the week they will spend with us.  I have scheduled to have the whole week off and the three of us will spend our days together until the kids get out of school for the holiday weekend.  We'll tackle our Christmas shopping while the kids are not with us.  I will cook and we will stuff ourselves.  It will be a low key, quiet and relaxing week. 

I recognize that it is a big effort for them to travel these days.  We all know it will be challenging for Lyn.  However, they want to do this and we want them here.  

Lyn is excited at the thought of coming to visit us for the first time since her diagnosis.  I think Mom is too.  I know I am!

Wednesday, October 9, 2013

Taos

Last weekend, Lyn was taken up to Taos for a quick day trip.  They left early and got home early.  Mom made sure to stick to the highway for their drive and not take a back road.  The drive was done this way to reduce anxiety for Lyn.




It worked.  They had a nice day out.

Tuesday, October 8, 2013

Balloons Everywhere

The Albuquerque International Balloon Fiesta has started which means there are hundreds of balloons in the air each morning that conditions are favorable.  Conditions are favorable for ballooning most days during the fiesta.  Albuquerque has the highest concentration of hot air balloons in the world and there are several up nearly every morning through out the year.

Lyn has seen the balloons nearly her whole life.  She was between 2 and 3 years old when our parents returned to New Mexico after several years away due to military duty stations.  Other than the October of 1990 when we lived in Montana, Lyn has spent the rest of her life in Albuquerque.  You would think that seeing hot air balloons would be passé after seeing so many in your life.  You would be wrong.

The balloons are a daily part of Lyn's routine.  She checks for them each morning once she is up and moving.  She will ask Mom if any were up if she sleeps late and she misses them.  When it is fiesta, she gets very excited over it.  Mom writes:

      The balloon fiesta's in full gear and about 520 hot air balloons got up. Didn't matter which way
      you looked you saw balloons. Think of brightly colored Christmas ornaments dancing in the sky.
      I was afraid she would get a whiplash trying to see them all.

      There were quite a few flying in our part of town. She kept turning, trying to see them all and got
      so excited she could hardly speak. Of course, each one was her favorite. It was wonderful. Seen
      thru the eyes of "a child" makes it more fun! She kept turning, pointing and just laughing.

      By the time we got to day-hab she'd calmed down.
      "Boy, wait till I tell everyone that I'm lucky and saw all the balloons."

To give you a sense of what Lyn was so excited over, here is a video a friend of mine took during yesterday's launch of the Darth Vader balloon.  He was a guest in the gondola.  The video lets you see just a small portion of the launch field and the growing number of balloons in the air spreading out over the city.  You might also spot Boba Fett and a Trooper in the crowd.


Lyn loves the shapes and colors of all the balloons.  It never gets old for her.  Honestly, it never gets old for us, either.

Monday, October 7, 2013

Forgetting Herself

Think about your preferences.

Think about how you like your favorite meal.  Is it a sandwich, soup or pasta?  Is it curry?  Is your favorite meal a burger made a certain way?  What about what you like to drink?  Do you prefer tea, water, juice or coffee?  Do you like milk or an alcoholic beverage?

Think about how you tend to your daily hygiene tasks.  Do you bathe at night to relax before bed?  Do you shower in the morning to wake up and get your day going?  Do you brush your teeth before you dress in the morning or after?

Do you even think about what you like or how you prefer to execute your day?  Probably not.  I know I hardly have to think twice about what I like.  If I have tasted something before, I am pretty sure of my like or dislike for it.  If I like something, I don't suddenly dislike it one day or forget that I liked it a week or month ago.  Then again, I don't have Alzheimer's.

Alzheimer's does make you forget these things.  You forget lifetime patterns of behavior or long entrenched preferences.  Lyn is forgetting.  She has forgotten that she liked apple juice and now claims that she never liked chocolate milk.  She has forgotten how she preferred her hamburger.  She also now states she has never liked taking a bath and has always preferred to shower.

She is forgetting herself.

Friday, October 4, 2013

Pseudobulbar Affect

I was sitting in the lobby of my ophthalmologist's office earlier this week waiting to be called back for my appointment.  As is my habit when in a waiting room, I was crocheting while paying attention to the world around me.  There was a television on in the room and I found myself watching a commercial for a prescription medication which I had never seen before.  The medication is to treat a condition I had never heard of, either.

The commercial caught my attention because of the symptoms and, if I'm writing about it here, it applies to dementia.  The condition is called Pseudobulbar Affect.  The Pseudobulbar Affect is a neurologic disorder secondary to dementia or brain trauma which leads to involuntary crying or laughing.   In May, I wrote about emotional contagion in which a dementia patient becomes more empathetic to others, mirroring their emotions.  Pseudobulbar Affect is not emotional contagion.




Lyn has not been diagnosed with it.  However, we've seen the uncontrolled crying and laughter in her.  Nikka can bring her to tears through laughter.  We did the same thing when we were visiting in August.  Lyn was anxious and we got her to laughing to avoid the tears.  She cries nearly daily.  When she reached for me saying "Hold still, I think you have a bee," my swatting her hand away (I am allergic to bees) caused instant, angry tears.

Mom and Lyn's physician have spoken of the increasing emotional outbursts.  They agree that she's going to need medication soon.  However, the conversations have not brought up this particular condition and have instead spoken in general terms of the emotionality of dementia patients.

I believe we may have a name for that emotionality.

Thursday, October 3, 2013

Malebolge

Dante wrote in his poem, Divine Comedy, that the eighth circle of Hell, Malebolge, is reserved for those who commit fraud.  Fraud that is punished in Malebolge includes many different kinds of deceit including extortion, hypocrisy and lies.  There is so much fraud to punish that there are actually 10 divisions to this particular circle of Hell.  The 10th division is where the falsifiers are punished by being afflicted with diseases such as rashes, dropsy, leprosy and consumption.  Mom, it appears, is on her way down to Malebolge.

She writes, "I think there are different levels of Hell and I'm going way down with the liars."

Yes, Mom.  According to Dante, you may be.  But, I get ahead of myself.  Mom is actively telling Lyn lies.  Are they for personal gain?  Not if keeping a peaceful household and a calm Lyn is personal gain. Mom writes of her misdeeds,

     "Yesterday Lyn asked if she has Alzheimer's.
  
     I said "Yes" and asked why.  

     She said on TV they had an old grandma and she has it.  The people were talking but the grandma didn't understand and they didn't know what to do.  

     I said I was sorry I hadn't seen that.  

     Lyn informed me that I don't have to see everything.  

     I said the grandma might have a bad case of Alzheimer's.  

     To which Lyn responded with "I don't have it and I don't have a diagnosis because I'm just me."  

     I agreed that she is just Lyn.  In the meet & greet she said that again and I agreed she is just Lyn.  I said I try to be careful not to use the words "Alzheimer's" or "diagnosis", if possible.  We all agree that sometimes Lyn just needs a little bit of help.  

     Then shortly after turning on TV, the ad she saw yesterday was on.  She said to look at the old grandma.  

     I, once again, lied to her.  I said that sometimes when old people have Alzheimer's it is different than when young people have it.  I pointed out how the family was talking about the grandma wandering and getting lost.  I said that since Lyn is young, her brain is healthier and we aren't worried about her wandering.  It was a commercial for an adult care program.  

     She said when she's older she's not going to have the same Alzheimer's that old grandma has.  

     I told her it was a good idea not to have it.

     She is becoming sensitive to even hearing the word Alzheimer's."

These are the lies Mom tells.  If there is a hell and if Malebolge is in Mom's travel schedule, perhaps she'll just be afflicted with a rash as punishment for her lies.  I think consumption may be a bit much.

Additional Information:
Psychiatrists and Nurses Admit Lying to Dementia Patients

Wednesday, October 2, 2013

Interviewing a New Respite Provider

Yesterday, Mom and Lyn had a meet and greet with a potential new respite provider.  The first impression of the individual was very favorable.

The individual is experienced and has worked with special needs individuals before.  It seems to be a family affair as the person's spouse also works in the same vocation.  During the interview, the individual had a number of activity suggestions and commented that activities are often identified by what is free or low-cost publicly advertised events such as pumpkin patches, free museum or zoo days or trips to the park.

The person took notes and discussed what supports Lyn needs as a result of her dementia.  The need for a stabilizing hand due to loss of depth perception and stability, the need to review menus with Lyn, the need to learn her patterns for expressing herself, asking for help or her likelihood of crying.  While the respite provider has not worked with a client who has dementia before, there was an openness to being responsive and redirective towards Lyn.

Both Lyn and Mom were happy with how the interview went.  The new respite provider starts tomorrow.

Tuesday, October 1, 2013

Feeding the Geese

Lyn enjoys feeding the ducks and geese at a local park.  They're very well fed and used to park visitors.  It has been the local spot for them for decades.

Lyn's familiar with the fact that the birds will come running to see if you have food for them as soon as you get out of the vehicle.  It doesn't worry her even though she can barely get in front of the car before she's confronted by the stretching neck of a demanding bird.



She is ready with food in hand.

On Saturday, when she, Mom and their neighbor paid a visit to the park, Lyn fed the geese and ducks for just a couple of minutes.  She and Mom had only doled out about half of the food when Lyn suddenly lost interest.  Instead of passing it to Mom, Lyn just took the remaining food and tossed it to one side for the ducks and geese to squabble over.  She was done even if they weren't.

She was happy though and the rest of the day went well.