Friday, November 30, 2012

The New Neurologist

Mom and Lyn visited with the new neurologist earlier this week.  The appointment went very well.

When he walked into the room he greeted Lyn first and introduced himself using his first name, successfully putting Lyn at ease.  He didn't talk down to either Lyn or Mom and addressed them both directly, using terms which were easily understandable.  When he had a question, he directed it to Lyn and only looked at Mom if Lyn was unable to answer.

Lyn was having a particularly good day.  She was working very hard to pay attention to the doctor and gave her best attempts to answer his questions.  She exceeded herself.  She was able to name the city, state and county.  She named the day of the week and the year.  She did not know the specific date, however.  The doctor gave her three words to remember.  When he asked her for the words about 5 minutes later, she was able to give two back.  When asked to draw two overlapping polygons, she drew two triangles.  One was inside the other.  They did not overlap.  When he asked her to draw a clock, he first asked if she could write her numbers.  She placed the 12 in the proper position and then filled in numbers 1 to 11 in proper sequence.  They were bunched together and the 11 ended up in the 9's position.  At that point, she got confused because she knew there were no more numbers needed on the clock but also knew there was an open space.  Both the doctor and Mom were very surprised at her level of lucidity.

Mom was a bit concerned about how the doctor would react to Lyn given how "with it" she was during the appointment.  Unfortunately, many are dismissive of early on-set Alzheimer's and more don't realize that an Alzheimer's patient can have a really good day.  She was quickly put to ease because the doctor did not dismiss Lyn, the reports or the early on-set Alzheimer's diagnosis.

He did a very thorough exam including verbal responses and a physical in addition to the Alzheimer's quick tests described above.  He had already had an opportunity to review her case file which is on record with the TEASC committed and includes all previous evaluations and labs.  He also discussed her history of seizures and the family medical history.

The doctor usually sees elderly patients.  He has a few patients who are younger.  They have Downs Syndrome.  He commented that he has no specific information that would apply to Lyn as nothing is known about the prevalence of Alzheimer's within the population of those with intellectual disabilities that are not related to Downs Syndrome.  He was also puzzled about the apparent lack of familial early on-set Alzheimer's in the family.

When he got to the topic of medications, Lyn started to draw within herself.  He promised to send Mom more information "in lay terms" so Mom and Lyn can evaluate it and make an informed decision about potentially adding it to her care.  He noted that the meds have been used on the elderly but there is no information on the effectiveness or impact on a younger patient.  When Mom and Lyn left, she was morose and said she didn't want to take medicine.

Mom asked about the agoraphobia diagnosis from the TEASC committee.  He agreed it didn't make sense and suggested she question it with the committee, particularly the psychologist who participated in the evaluation.  He supported listing Sundowner's and agreed that Lyn's Sundowner's was atypical.  The funny thing is that her Sundowning symptoms follow the pattern described as atypical.  It is described as atypical because it is not the normal progression of symptoms.  However, this progression is known to Alzheimer's specialists.

Despite Lyn's reaction at the end, the visit as a whole was very good.


Thursday, November 29, 2012

Birthday Wishes

Today is Mom's birthday.  

It will be a day just like any other.  She'll open her curtains in the morning to check for balloons.  She'll read the paper and make sure she's not listed in the obituaries.  So far so good on that front.  She'll spend her day taking care of Lyn.  She'll get a call from my family.  Hopefully others will call as well.   She won't get her birthday gift from me because I'll bring it with me in two weeks.

I don't know if Lyn made her a picture or not.  I did call and remind her to do so.  Given how I've forgotten Mom's birthday in the past, I don't presume Lyn would remember Mom's birthday even if she didn't have dementia.  I've been reminding her for years.

I know today will be a quiet day but I'll make up for that when I'm there.

Happy Birthday, Mom.  I love you.

Wednesday, November 28, 2012

An Early Visit

This weekend, Lyn's respite provider took her to the Christmas Corral hosted by the Galloping Grace Youth Ranch.  They were not looking to buy a Christmas Tree.  Mom already has one.  However, they were attracted by the giant candy canes and Santa's village set up.  Mom had seen the Christmas Corral advertised in the paper and Lyn wanted to go.

It was opening day and the Corral was fully prepared for their visitors.  It may be an early start to the Chistmas season this year because of an early Thanksgiving, but that wasn't stopping anyone; least of all Lyn.  She was thrilled that she got to see Santa.


She spoke to him and told him what all she wants.  She doesn't remember what she told him and that's OK.  Just look at how happy she is to be sitting next to the jolly old guy.

The staff took this picture of Lyn and sent a business card home with her.  On the back, they wrote that they had this picture and one other.  If Mom wanted them, they would be happy to email them to her.  Mom wasted no time in sending them an email, thanking them for their kindness.  They followed through and sent the pictures.  This made Mom's day.  Unfortunately, it is not often that complete strangers take a moment to be so generous with their time.  We greatly appreciate any kindness shared with Lyn.

Seeing Santa made Lyn's week.  She's been telling Mom about it repeatedly.  She even made Mom promise to take her back again.

It was an early visit between Lyn and the elf.  It probably won't be the last this year, either.  That won't matter to Lyn.  She'll greet each Santa she sees with the same love, excitement and belief as she does the one before.  She's never lost that and I love her for it.

Monday, November 26, 2012

Silver Alert in Action

Saturday, while on the way back from Thanksgiving with my husband's relatives, we drove through New Jersey where we spotted several message boards along the way flashing the "Silver Alert Call 511" message.  New Jersey had issued a statewide Silver Alert for a missing elderly or intellectually disabled person.  It is the first time I've seen the alert being used since I learned about them last year.  The good news, hopefully, is that the individual was found Sunday afternoon.

New Jersey joined the Silver Alert program in late 2009 and has issued several alerts since.

Friday, November 23, 2012

Water or Ice

Recently, Lyn stood in front of the fridge with an empty glass.  She just stood there for a good 10 minutes, staring at the fridge. Mom watched and waited to see what she was doing.  Finally, she turned to Mom and asked "Which one is for water?" 

The fridge has a dispenser for water and ice in the freezer door.  She couldn't figure out which lever was for ice and whih was for water.  She couldn't figure out the symbols either.  I am not even sure if she can see the symbols clearly enough anymore to understand them.  She apparently never considered turning to the sink, a few feet away and geting water direcly from the tap.

Mom directed Lyn to the correct lever and she poured herself the water she wanted.

Thursday, November 22, 2012

Thanksgiving

Thanksgiving is a day to spend with family.  Mine is definitely in my thoughts today.  No matter how many years I've spent on the opposite side of the country, this remains true.  Fortunately, I've already purchased my tickets to fly out to spend a few days with them soon.  We're all looking forward to it.

Mom and the tree of us kids
From my family to yours; may your day be filled with great food and wonderful people.  May you have all that you need and may joy be abundant in your life.

Thank you for reading and joining us in our journey with Lyn.

Wednesday, November 21, 2012

Neurology Appointment


Six weeks ago, Mom followed up on one of the recommendations from the TEASC committee and began the process of getting Lyn scheduled with a geriatric neurologist.  She had called the neurologist's office and requested an appointment.  She was turned down due to Lyn's age and a lack of an official referral.

The neurologist is associated with the committee and specifically mentioned by name in their report.  Mom explained that she was taking action due to the committee's findings and that was rejected as well.  Because of the neurologist's association with committee, the entirety of Lyn's file was available to the neurologist and his staff.  Mom called her contact with the committee and explained the challenge she was having getting Lyn on the neurologist's schedule.  Her contact stepped in to help out.  

In Mom's next conversation with the scheduler, she was again turned down for an appointment.  This time, she was told that the doctor would review Lyn's file and he would decide if he needed to see her.  

Earlier this week, the neurologist's office called to schedule Lyn for an appointment next week.  The neurologist has decided to see her.  

Tuesday, November 20, 2012

Processing What it Means

First, let me start by saying that my family and I do not discuss the terminal aspect of Lyn's early on-set Alzheimer's on a daily basis.  Lyn is a daily part of my family's life, however, and my children know she has dementia.  My husband and I try to explain and answer our children's questions in age appropriate ways without hiding the truth from them.  All that being said, my children sometimes surprise me with their thoughts.

Last night, as my little one was getting ready for a bath, I was asked if I was worried.  I assured my child that I was not.  It was a good day and I had no worries.  Taking the hint my child offered, I asked if my child was worried and received an affirmative answer.  I asked what was the cause of the worry.  My child suddenly looked very sad and said "I don't want to die.  I don't want to grow up and die."  We spoke for a bit, talking about how many years my child has to enjoy before worrying about death.  My child then said "I don't want you to die."  Again, I tried to focus on how many years I have to enjoy before I die.  I tried to explain that I need to be much older than Grandma is today before I plan to die.  I anticipated that we'd then list off our family members to see when they will die.  My child did not disappoint and it was interesting to see the order in which our relatives were listed.  My little one was deliberately holding Aunt Lyn to be the last one in and real reason for the list.

"What about Aunt Lyn?  She's going to die and she's not old."
"You're right.  Aunt Lyn is not as old as Grandma but she'll die before Grandma."
"I don't want her to die."
"I don't either but she has a disease that is slowly killing her brain.  Doctors cannot stop it."
"Do I have the disease?" I could honestly answer my child with a "No.  I don't think you do."

My little one asked about when Aunt Lyn will die and got a response of "In a few years."  My child, looped back to the "I don't want to grow up and die" statement but added in "like Aunt Lyn."  Here was my opportunity to break the loop of my child's logic.

"You won't.  You're going to live to be very old.  I bet you live to be 86 or 94 or even 100!"
"I don't want to be 100."
"Why not?"
"I don't like 100."
"Oh!  What number do you like?"
"10."
"Good because I'm pretty sure you're going to live to be 10.  What other number do you like?"
"1,000."
"Do you want to live to be 1,000?"
A sweet smile finally creeped onto the face in front of me.  "No.  I want to be 1,001."

With that, the evening's crisis of worry was averted.

Monday, November 19, 2012

TREM2 Variant

A research team has announced findings that a rare TREM2 variant, R47h, places carriers at a greater risk for Alzheimer's than the general population. TREM2 is a gene which helps trigger immune responses in the body and these findings support one of the theories about the cause Alzheimer's; namely inflammation in the brain.  If the immune response leads to inflammation in the brain, the body may be unable to clear out the build up of toxins such as amyloid beta.  This build up then leads to Alzheimer's.

The study looked at individuals with Alzheimer's as well as healthy individuals in Iceland, Norway, Germany, Netherlands and the United States.  Those individuals with the R47h mutation were three times more likely to develop Alzheimer's.  The mutation is rare, however.  It is found in only 0.3% of the population.

Additional Information:
Gene Nearly Triples Risk of Alzheimer's, International Research Team Finds
New Gene Triples Risk for Alzheimer's Disease

Friday, November 16, 2012

Looking Ahead

The holidays are hard for caregivers.  The stress of caring does not get any lighter just because the rest of us are feasting or making merry.  Caregivers of individuals with dementia may find themselves unable to join in the festivities because they have so little back up or the person who they care for is uncomfortable in large gatherings.

For many, the holidays are already hard.  The days are shorter and the weather may be cold and wet.  They may be reminded of and miss loved ones who have passed already.  They may not have a date for  a New Year's kiss.  They may still have to feed and clean a person who is no longer capable of expressing gratitude or understanding.

If you know a caregiver, consider reaching out to them this time of year with a bit more frequency than you might in the summer.  Let them know you care even if you're unable to ease the daily grind for them.  I know it is appreciated more than you may realize.  I just heard it in Mom's voice when I called to see how late is too late at night for me to book a flight in to spend a few days with them.  I thought about making it a surprise and, like last year, thought the knowledge and anticipation would provide more happiness than a late night knock on the door.

Thursday, November 15, 2012

Feast Day

When Lyn arrived at day hab on Monday, she was expecting an outing to the New Mexico Museum of Natural History and Sciences.  A few minutes later, she learned that they would instead be going to Jemez Pueblo to join in the feast day celebrations.  One of the other day hab participants is from Jemez and has relatives who routinely invite the day hab staff and participants to the pueblo for the feasts.  The pueblo used to be open to the public on feast days but is no longer able to accommodate the numbers of visitors.  So, it is only because of the invitation that they were able to join in the festivities today.

Lyn was excited to tell me about it on the phone Monday night.  She had a wonderful time.  She said she watched the dances.  She ate chicken, green Jello and drank Kool-Aid for lunch.  She was happy there was something without chile that she liked available.  She seemed most happy with the green Jello.

The feast included a throw.  During a throw, the pueblo residents fill baskets with goodies to share.  The goodies are usually food items like fruit or loaves of bread.  They take the filled baskets to their roofs.  Once there, they throw the goods to the community members down below.  Lyn got an orange in Monday's throw and was very happy she caught it.

The day hab staff had Lyn and the rest of the participants back at the facility in time for their afternoon pick-ups.  Lyn didn't have any anxiety over the trip and really enjoyed the day.

Wednesday, November 14, 2012

Struggling to Explain

Lyn is struggling more frequently to explain her thoughts and express her desires.  She frequently is unsure of the word she needs, even if it is a basic word or concept she's trying to convey.  Mom's been having to guess much more often and has started asking questions to help anticipate Lyn's needs.

Mom writes: 

"Yesterday, she was trying to tell me something about her room.  I was tucking her in and she said "I need you to do something."  Ok, what?  She struggled saying "I wish you could, uh, change something."  She looked confused.  Began looking around her room.  It was now time for 20 questions.  Do you need laundry done?  Do you want windows washed?  No, each time.  
She began touching her bed.  "Do you want sheets changed?"  "Ok, but I need a bigger blanket."   

I asked why she needed "a bigger" spread.  "Because I got cold."" 

Tuesday, November 13, 2012

Conundrum


Lyn is a bit of a conundrum.  Her bowling scores are currently on the rise.  Her focus and physical mannerisms while bowling are on the decline.  You would think her scores would also be on the declines as a result.


Mom recently shared her observations of Lyn bowling, noting that she's not looking where she's placing her feet or paying attention to how she's releasing the ball.  Essentially, at this point, the skill and form that she used to show has been replaced with someone just casually walking up to the line and throwing the ball.  It is apparently working for her as the last several weeks scores above show.  

Lyn stated that she about fell over when she saw them.  

Monday, November 12, 2012

Showing Off

Lyn wanted to show off a bit this weekend.  While we were having our Skype conversation, she said she needed to show me something just before ducking off-screen.  A moment later, she was back with one of her coasters.  It was one she had finished earlier in the week.  She's very proud of it.

She wants you to see it too.  Lyn specifically asked if I would take a picture of her coaster and put it up on the blog.


Not a problem!

Friday, November 9, 2012

Honor the Caregiver

November is National Family Caregivers Month.

It is with a grateful heart that I sit here thinking of Mom and the care she provides my sister.  Mom has spent 40+ years looking after Lyn, ensuring that her needs are met and that she's supported such that she doesn't know that she has limitations.

For all the nights you spent sitting up in a chair with Lyn so she could breathe, I thank you.
For all the impatience and frustration you soothed so Lyn and I could share a room as peacefully as possible, I thank you.
For the insights you shared about Lyn, the setting of expectations, the broadening of horizons so that we all could see in her the spark you saw, I thank you.
For never giving up on her, for pushing her to achieve and for holding her accountable for her actions, I thank you.
For fighting for her education, advocating for her health and demanding that the laws protecting her be appropriately applied, I thank you.

You taught us that she's a person and our sister first and foremost.
You taught us that she is not defined by her disability and not limited by her test scores.
You taught us that she is as worthy of love, respect and care as the rest of us.
You gave me a model as a mother that I hope to live up to.

I am proud of you
because you never gave up on her or the rest of us,
because you continue to be there for her in ways unanticipated,
because you are Mom and you make it all seem possible.

I am proud of you and humbled.

Thank you.

Thursday, November 8, 2012

Pushing Back the Timeline

An extended family in Colombia has a gene mutation which leads to Alzheimer's by the time individuals are in their mid-40's.  The extended family consists of about 5,000 members in 25 familial groups who share a common ancestor who introduced the mutated gene into the mix.  The mutation is known as the Paisa Mutation.  Because of this family, the timeline for identifying changes in the brains of individuals who will develop Alzheimer's disease has been pushed back a bit further.  A year ago, scientists announced they could identify changes in the brains 10 to 15 years before the onset of recognizable symptoms.  Now, changes have been found in this family as many as 20 years prior to the on-set of symptoms.

Current thinking is that the earlier you start treating for Alzheimer's the better chance you have of slowing the progression of the disease.  If an individual is carrying a mutation that leads to Alzheimer's this knowledge may help them receive treatment as early as possible.  One of he problems is identifying who should be tested to see if they have such a mutation.  In the Colombian family, it is pretty obvious that they would all need to be tested.  However, if you haven't had or know of a history of familial Alzheimer's, you might never consider getting tested and treated as a young adult.

Wednesday, November 7, 2012

Post Called On Account of Election

I majored in Political Science in college.  I'm a news junkie.  I'm sorry.  I think apologizing is one of the twelve steps towards recovery.  I'm struggling, you see, because I seem to have fallen off the bandwagon.  I spent the night watching the election results instead of writing a real post about dementia.  I spent the night missing Tim Russert.

Lyn doesn't care who is President.  She would shake the President's hand and thank him for the work he does.  Maybe those of us who do care can learn from her.

Tuesday, November 6, 2012

Decision Making and Attention Seeking

One of the interesting aspects of dementia that folks don't always consider is the individual's ability to still make decisions.  The decision making functions don't just disappear overnight.  There is a certain amount of reasoning which may be present for some time into the individual's decline.  The challenge is that we really don't have a way to measure how much reasoning or decision making capability still is available at any one time.  One day, the individual may seem quite cogent and the next may not seem so lucid.  This capacity, even in a damaged state, allows the individual to engage in activities which are attention seeking in way which seem logical to them even if they seem illogical to us.

Lyn has been working to establish a new attention seeking behavior.  Every Monday morning, Lyn's speech therapist comes to the house to conduct their hour long session.  Normally, Lyn is able to sleep until she wants to get up.  On Monday's, Mom wakes her in plenty of time for her to get dressed and have some breakfast before her therapist arrives.  For the past several weeks, instead of getting ready, Lyn would sit in front of her computer and not respond much to Mom.  Then when the therapist arrived, Lyn would stumble out of her room acting like she just woke up.  She would act in a tired and surly manner.  This would evoke irritation (attention) from Mom and sympathy (attention) from the therapist.  The therapist would encourage Lyn to get up a bit earlier and eat breakfast.

Another example of this kind of decision making/attention seeking comes from a colleague of mine who is dealing with her father's Alzheimer's.  Apparently, the gentleman was engaging in inappropriate behavior with other residents at the nursing home.

The interesting thing with both Lyn and the gentleman is that they both were making choices to behave as they were.  When confronted and told the behavior was unacceptable, Lyn's behavior changed.  Yesterday, she was dressed, fed and happy when the therapist arrived. When confronted, the gentleman stated he knew what he was doing and wanted more attention than his wife was giving him.

Monday, November 5, 2012

Entire Families

In reading an article this past weekend about Alzheimer's, a phrase came up that jumped up at me.  The article states that the disease effects entire families.  Alzheimer's is not just a diagnosis of the individual with the disorder.  It is a diagnosis for the whole family.

When the individual is married or in a committed relationship, the spouse is suddenly faced with a decision to become a care provider directly to the individual who has been diagnosed or to help arrange for (an)other care provider(s).  If the diagnosed individual has children, they may become the care providers.  If the individual has young on-set Alzheimer's, the children may not even be old enough to care for themselves, still requiring parenting.  Easily, three generations of a family are immediately impacted and that ripples out to later generations as well.  Parents, siblings and children have not only the potential tasks of caring for the diagnosed individual.  They may have the concern of their own risk for Alzheimer's or another disorder leading to dementia.  For example, if a relation to the diagnosed individual has diabetes, the risk for Alzheimer's is a bit higher in that individual.

Fortunately, the diagnosis does not have to mean a death knell for the family.  The diagnosed individual is facing a terminal disease as are many cancer patients.  As with cancer patients, this can inspire family members to acts of advocacy and education, to take preventative measures, to seek early diagnosis and treatment.  It is not an easy road we face when such a diagnosis hits our family.  However, beauty can still arise from it.

No matter how dementia is impacting your family, let's make today beautiful.


Friday, November 2, 2012

Disaster Preparedness

Hurricane Sandy gave me time to think as I waited for the wind and rain to stop.  One of the things I got to thinking about was how hard a disaster is to deal with when you have all your faculties about you and understand what's going on around you.  I've been fortunate that I've never had to evacuate my home in all the times I've waited for a storm to pass.  Though, there have be a couple of times when we were prepared to go should the circumstances call for it.

My family has been faced with the loss of everything as a result of our home burning down in the 1980's.  The loss of our home was nothing compared to the struggles those impacted by Hurricane Sandy are going through right now.  However, it was a personal disaster for us.  When I recall that event and I understand what is happening to so many, I wondered what such situations would be like with Lyn in her current state.  How much harder would they be to manage when you're also trying to manage an individual with dementia?

Remember that dementia increases confusion and fear.  The individual cannot fully understand or adequately process why they are out of their own environment, why they're someplace strange, why their schedule is disrupted.  They may have increased difficulty with vision or hearing in addition to the processing and emotional challenges.

What if there is an evacuation order and the individual refuses to leave?  Are they competent to make that decision?  Does this vary from state to state?  Are there shelters available that can handle the special needs of dementia patients?

In wondering these things, I came across a Ph.D. dissertation written by Janelle J. Christensen at the University of South Florida titled "Hurricane Preparedness of Community-Dwelling Dementia Caregivers in South Florida".  (The download button on that page gets you access to the entire 354 page dissertation.)  It is quite a read and I've not had a chance to finish it yet.  She makes a good point in it, though, when she reminds the reader that the previous experience the caregiver has in going through a hurricane with the dementia patient is "likely to be very different in the following years."  Given the progressive nature of the disease, how the patient responds or experiences the stimuli of the event will not be consist from one event to the next.

I have no suggestions right now on this.  I just have more reading to do.  There's a tremendous amount in the dissertation which appears to be of great value.

Additional Information:
Alzheimer's Association - In a Disaster

Thursday, November 1, 2012

Another Silver

On Sunday, Lyn competed in the Regional Special Olympics bowling competition.  There were approximately 600 athletes that were scheduled to bowl over the two day competition.  Lyn was scheduled for the first group in the morning which meant a 7:30 start time to her game.

She and Mom seem to like the early starts.  They're able to get in and out before too much of the day is gone.  This lets them go out for lunch or run errands in the afternoon if they really wanted.  This time, they wanted to go home and nap.

The early start was good for Lyn.  She had three good games, scoring a 124, 112 and an 89.  This was enough to earn her another silver meal for her age group.


Lyn was thrilled and showed each of us her medal when we spoke via Skype this weekend.  We all are very proud of her!  Even my little one said "Good job, Aunt Lyn!", making her just beam.