Monday, April 30, 2012

A New Shirt

My husband and I have been fortunate enough to travel outside the US a couple of times as a result of our jobs.  When these trips occurred, Mom and Lyn would graciously fly out to stay with our children while we were gone.  It worked out beautifully each time.  Mom got unrestricted access to the grandchildren.  Lyn got to go somewhere each day.  We were able to travel knowing our children were safe and secure.  It was such a gift to have them with someone that took all worry out of the situation.

We knew, however, that we better not come back empty handed.  Of course, the kids wanted us to bring them back something.  However, so did Aunt Lyn.  She's subtle, remember?


Finding a gift for her is a challenge on a good day.  Fortunately, she's been pleased when we bring her a tee shirt from our destination.  She seems to love the brightly colored screen-printed shirts that clutter the tourist traps.  If her tastes were different, I would gladly put more effort into finding her something more unique or something that really highlights the skills of the craftsmen and women in the area we visit.  If her tastes were different, I would spend a bit more for her and do it gladly.

Then again, it is Lyn.  She likes what she likes.  That smile above should tell you just how much she likes those screen-printed tees from the tourist traps.  It is what she would buy herself if she were there with us.

Sunday, April 29, 2012

Consistent Scores

Lately, Lyn's been bowling a 104 each week.  This typically occurs in the second game, but has happened a couple of times in her first game.


Her scores so far this year seem to be a bit more consistent than when we began charting last year.  I don't know if this is significant or reflects the changes going on in her brain.  I do find it interesting, nonetheless.

This week's high score of 143 was very exciting for Lyn.  She insisted on calling our uncle to see if he had ever scored that well in bowling.  He's a rancher; not a bowler.  The two are not mutually exclusive.  However, if you knew my uncle, you'd know this is a man who has never traded out his cowboy boots for bowling shoes and never will.  He loves Lyn and is easily amused by his conversations with her.  He assured her she was a better bowler than he and that he didn't remember ever getting such a high score.

Saturday, April 28, 2012

The Unexplainable

Mom and Lyn have a three bedroom house.  Mom has the master suite and Lyn has a bedroom.  The third bedroom stores some of Lyn's belongings like her desk and serves as a guest room.  Lyn has swapped rooms more than once.  The last time she changed rooms was a couple of years ago.

This week, Mom painted Lyn's room as a result of a request from Lyn.  Lyn picked out the color.  The paint smell was fairly strong and took 4 days to really clear out of the room.  Lyn didn't want to sleep in there.  Mom wasn't sure if the paint fumes and the oxygen condenser together in the same room would be a problem.  Mom moved Lyn's oxygen condenser into the guest room where Lyn has been sleeping ever since.

Lyn has no desire to go back to sleeping in her bedroom.  Her tv, clothing and the vast majority of her belongings are there.  Mom has no desire to move the furniture from one room back to the other.  Lyn has a very large and heavy dresser which takes multiple people to move.  It is so large that it is difficult to maneuver it through the 90-degree turn from the hall into the guest room.  Of the two rooms, the guest room is smaller.

Lyn is not expressing a desire to move the furniture.  Nor is she expressing any insight into why she's still sleeping in the guest room.  Each day Mom asks if Lyn would like the oxygen condenser moved back to her room.  Each day, Lyn says "No."

Personally, I wonder if lighting has a lot to do with it.  Of the two rooms, Lyn's is the darker room.  The guest room is fairly bright at night because of the exterior lighting just outside the room's large bay window.

There are times, even before the dementia diagnosis, that Lyn would do something that was just unexplainable.  This is one of them.  It is not an issue.  It is just something a little bit different that she's currently doing.

Friday, April 27, 2012

Those Pesky Words

Lyn has been working with her speech therapist for over a decade.  The therapist has been working with Lyn on a small book of sight words as part of their normal exercises.  At her greatest level of proficiency, Lyn had the ability to read about 125 sight words.  Now, on a good day, Lyn can read about 100 sight words.  The loss of those words has mostly happened over the past 8 months.

In addition to the loss of her sight words, Lyn's also now flipping words.  For example, when she offered mom the hole punch, she said "pole hunch."  It is happening so frequently that our brains are just automatically switching the words for her.  We all do it occasionally.  She's doing it multiple times daily.

Words are just a bit more of a challenge for Lyn.

Thursday, April 26, 2012

Patience

Numerous times though my life, I've been told by acquaintances that "God put Lyn in (my) life for a reason" or that I "was lucky to have Lyn as a sister."  While I love my sister very much and am glad she's my sister, there were times when I have wished my sister was normal.  There were times when she drove me to deep frustration.

Mom used to say that Lyn was here to teach me patience.  I'm pretty sure that I would give Mom The Look when she'd make that statement.  When I would get frustrated with Lyn, Mom would ask me to tell her the definition of patience and to spell the word.  The first time or two, I had to refer to the dictionary and that would be enough of a break in the action to start redirecting our focus from each other.  That didn't last long because I quickly could regurgitate the entire dictionary citation for patience through gritted teeth.


It befuddles me when people say that I'm patient.  I'm not, really.  My husband, children and mother can all attest to that.  I look at others and admire their patience.  I've seen people go over and over a topic with Lyn such as the time my ex-boyfriend tried to teach her to tell time.  Lyn's speech therapist has spent years working on a small book of sight words with her.  I see how Mom works with Lyn day in and day out to keep their household running smoothly.  Sure, she gets short with Lyn sometimes.  However, she is still one of the most patient and loving people I know.

Wednesday, April 25, 2012

An Obligation of Love

Both Mom and I feel a strong obligation to provide Lyn with the love and care she deserves.  For us, like so many other care providers, it is unfathomable that we would not strive to satisfy that obligation.  But, the question remains, are we really obligated to care for her and what does it mean to do so?

An obligation is a course of action to which a person is bound to arising from custom, law, or a sense of duty.  It may be a binding promise, a moral requirement or even a contract.  As a foster parent, I am obligated to provide a certain type of discipline for the children placed in my care.  For example, I signed a legal contract stating that I would not use physical discipline.  In that case, I have taken on that obligation as a result of my own beliefs on discipline (the moral requirement) and a legal contract.  But is providing care for my sister an obligation in the same way?  

Today, there is no legal requirement to continue caring for Lyn.  She is, after all, an adult in her own right.  However, there is the moral requirement to continue at least check in and make sure she's ok.  Beyond that, there is the obligation of love that keeps us more closely involved in her daily life and meeting her care needs.  

The obligation of love answers the question of "If not I; then who?" before the question is really asked.  If I do not step forward, then who will do so?  Obviously, Lyn is fortunate to have Mom in her life.  From the moment she was born, Mom has daily answered that question.  It doesn't matter that Mom had to sleep sitting up in a chair for months on end, holding Lyn upright so she could breathe.  Or, that 40 years later, Mom is back to making sure she can breathe at night.  The obligation of Mom's love for Lyn, makes those efforts something that is done without question.     

In a recent conversation with a new acquaintance, she spoke to me about her own mother's dementia and her father's insistence that her care is his job.  He refuses to seek the assistance of others despite the demands of his own health concerns.  He explains it to his children that this extreme commitment on his part is a result of how seriously he takes their marriage vows.  While I admire the sense of duty he is expressing, I pointed out that seeking assistance does not break those vows in any way.  He can still meet his obligation by ensuring his wife is cared for even if that means that others are doing the bulk of the work.  

Mom and I recognize this duality in our own commitments to Lyn.  There may come a time when her needs are beyond what either of us can provide directly.  Placing her physically in the care of a nursing home does not mean we are shirking our obligations to her.  Now, if we were to place her and not visit or check in on her, that may be a different story.  It is the walking away that would be the problem.


Tuesday, April 24, 2012

Natural History Museum

When I was young, I worked at the New Mexico Museum of Natural History and Science.  My time with the museum began before the museum even opened.  I was fortunate to be invited to work in their Naturalist Center, a hands-on education room geared for children, as the museum was being built.  It was a wonderful time and I had permission to roam freely through out the building as the various permanent displays were being built.

As a result of my 7 year association with the museum, Lyn was frequently there.  There were times when a portion of the museum was nearing completion and I was able to take Mom and Lyn in to see it.  They liked to know how far a display had progressed.

When the museum commissioned sculptor Dave Thomas to create two life-size bronze dinosaurs for the entrance, Mr. Thomas set up shop in a wing of the museum near the cave exhibit.  For months, he sculpted the dinosaurs in clay before casting them in bronze.  The first dinosaur to be finished was Spike, the Pentaceratops.


Shortly after Spike was installed, we convinced Lyn to pose for a picture.  It wasn't too long afterwards that the Albertasaurus was installed.

At that time, the path to the entrance took you right between the two and you felt like you were cutting through a fight, like the Sharks and the Jets were on either side of you ready to throw down.

I smile when I look at this picture.  Aside from the fact that it is one of my favorite people at one of my favorite places, I remember the moments after this picture were taken.  The day was a typically hot and sunny summer day in New Mexico.  Spike was very hot.  Lyn had reached behind her to touch the sculpture without thinking or realizing how hot the bronze would be.

Monday, April 23, 2012

Evening Appointments


Mom has had to make a change to her schedule to alleviate stress on Lyn.  As I've mentioned in the past, Mom and Lyn are active members of their church community.  Occasionally, Mom has church commitments which occur in the evening hours.  

Up until recently, Lyn has been able to stay engaged and calm though the meetings.  Her dementia is progressing and she's no longer even remotely comfortable.  Mom writes:

"I had a Pastoral Council meeting at church.  She always goes with me.  After about 45 minutes, I could see her fold into herself.  If you saw her do it you would think "She is cold and just trying to keep warm."   The meeting went 1.5 hours and when we were done the deacon wanted to ask me something.  I answered him then turned around just in time to see her bolt out the door.  It was 9pm.  I pushed through everyone to get out to her.  The Sundowner's was in full throttle.  I said "Wait!" and all I heard was "I don't see the car!"  It wasn't directly in front where we park in the mornings.

I realized I have another change to make to my schedule.  I have been teaching a Pre-Baptism class on the second Saturday of each month.  It has been changed to the second Tuesday at 7 PM.  I told Father this morning that I won't be able to continue the class now that it is in the evening.  I explained a bit about Sundowner's.  I was afraid I'd be chasing after her like last night.  He said "Of course your first obligation is to Lyn."  He'll get someone else to teach.  When we got home, she was hyper and couldn't settle down even after her bath.    Finally got her to bed about 10:30."

Even the ladies at day hab have commented on the changes in her recently.  Mom writes:

"Yesterday when I picked her up they were all outside.  I talked to one of the day hab employees a bit.  She said how nice it is that Lyn comes in every morning so happy.  She's still Miss Sunshine but they have noticed how she seems, some days, to struggle mentally, with her reading, her money etc.  They keep everything low-key for her."

Sunday, April 22, 2012

Unhappy with Her Score

This week, Lyn decided she wanted a bowling score of 100.  On Thursday, she bowled a 95 and a 104.  She was not happy.  Mom pointed out that 104 was more than 100 and that Lyn had done better than she wanted.  It didn't matter.


She wanted a 100 and nothing else would do.

Saturday, April 21, 2012

No! Mine!

In Lyn's final year at the Albuquerque Special Preschool, the school coordinated a Christmas party with a nearby middle school.  They paired two sixth graders with each student in the preschool.  The sixth graders came to the preschool with presents for each child.  Refreshments were available and the children were allowed to open their presents during the party.

The teacher working with Lyn was thrilled because Lyn participated and demonstrated appropriate behavior throughout the party.  She unwrapped her own gift and really seemed engaged with the two sixth graders who were working with her to make the day special.  They had brought Lyn a tea set that came in a sturdy, suitcase-like box.  Mom was thrilled when she learned of Lyn's reactions to the day's activities and the gift.

At the end of the preschool day, after Mom had loaded Lyn and I back into the car to return home, I apparently turned to my sister and demanded "Give me it!  I want to see it!"  (Let me stop here and state that I do not remember this event.  Unfortunately, I can believe I was an imperious brat in that moment.)

Lyn turned as far from me as the car would allow and yelled "No!  Mine!"

I burst into tears and tried to get Mom on my side by saying that Lyn was being selfish and not sharing.  Mom, much to my apparent dismay, told me to leave my sister alone and that the gift was hers; not mine.  Mom, however, was even more excited.  This was the first time that Lyn had not given into my demands, the first time that she had uttered those normal childhood words of "No!  Mine!"  She asserted her ownership and was not going to back down on it in the face of my noisy tears.

For weeks, any time I attempted to get the tea set in my clutches, she would snatch it away from me and would repeat the "No!  Mine!" reaction.  Mom was proud of her and continued to advocate that I back off.

Lyn, however, would not play with the set.  She would admire it in the box.  She would guard it jealously from me.  She would not open the box and play with it.  Mom and Grandma tried to show her that she could open it and that the box contained many pieces for her to play with.  The moment they would lift the lid to take out a piece, she would loose interest and walk away.

Eventually, however, she did allow me to look at it.  Eventually, the pieces came out of the box and we had many tea parties with the set.  I remember the tea pot held many rounds of Kool Aid.

Friday, April 20, 2012

Show Me

Lyn was enrolled in a private pre-school called Albuquerque Special Preschool when she was three years old.  The students who attended ranged in age from two years to five.  The school's mission was to prepare special needs children for kindergarten.  At that time, there was no special education in the public schools.  The curriculum focused on speech, physical therapy and socialization.

The school ultimately closed its doors because parents like Mom pushed the school system to provide the education the children needed.  One of the parents was an attorney.  He coordinated a class action lawsuit to get the school system to comply with federal regulations.  The school system kept insisting there was no money for special education.  One month after the lawsuit was filed, the school system came up with the money needed to meet the needs of the 25 children listed in the lawsuit.

Lyn responded to the program well and was allowed to stay until she was six.  By that point, the public schools had programs in place.  In addition to helping her learn to speak, the teachers really helped build Lyn's self-confidence.

When Lyn was four and still non-verbal, the teacher had made arrangements to take the six students in her class to the park a couple of blocks from the school.  She was accompanied by the teacher's assistant.  When they arrived at the park, Lyn decided she had to go potty but didn't tell anyone.  She just turned around and walked back to the school, crossing a busy four lane street.  She used the restroom and returned to her classroom to wait for the teachers.

Meanwhile, the teachers at the park were in a full panic.  They searched the park and immediate surrounds, calling for Lyn.  They called the police.

Back at the school, the school head was heading down the hall when she heard a sound in Lyn's classroom.  She peeked in and spotted Lyn playing at a table and realized she was unattended.  She asked Lyn where the teacher was and Lyn pointed out the door.  The lady said "Show me."  Lyn took her and and walked outside with her.  Lyn lead her down the street back to the park.

The teacher's aid spotted them approaching and screamed "Here she is!"  The teacher came running and scooped Lyn up into a massive hug.  The police had already arrived.  They confirmed that Lyn was the missing child and soon departed.  The group returned to the school.  Once again a "Show me" got Lyn to reveal the reason she went back to the school on her own.

The poor teacher was devastated about loosing one of the children even though it turned out OK in the end.  She tendered her resignation that day (effective at the end of the year) and never took the children to the park again.

Thursday, April 19, 2012

Summitt Steps Down as Head Coach

Eight months ago, Pat Summitt, the head coach of the women's basketball program at the University of Tennessee, announced that she had been diagnosed with early-onset dementia.  Yesterday, she announced that she is stepping down.  While she is taking on the title of Head Coach Emeritus and will still hold office hours, the progress of her disease has been fast and noticeable.  

Her legacy is astounding as is her passion for her work.  The support and loyalty of her colleagues is just as impressive.  As her disease progresses, I hope that support does not wane.  I additionally hope that her son finds that he is being adequately supported as he experiences his own journey through his mother's disease.

Update:  It has been announced that she will receive the Presidential Medal of Freedom as a result of her life's work.

Additional Information:
Tennessee's Pat Summitt Named Head Coach Emeritus

Wednesday, April 18, 2012

Genetics and Alzheimer's Disease

Given that my sister has some form of early on-set dementia, I have concerns about the heredity of conditions that cause dementia.

Apparently, early-onset dementia can be caused by mutations to four genes which are passed from parent to child.  These mutations are autosomal dominant and only require one parent to pass them to the child.  Even late-onset dementia has a genetic component.  Individuals with Down Syndrome have a dramatically increased risk for dementia, specifically Alzheimer's.  Despite the genetic component, it appears that not everyone who has the mutated genes ends up with any form of Alzheimer's.  As a result, more research is needed.
  
Knowing the genes that are associated with any of the forms of Alzheimer's, scientists are able to provide tests to help identify those individuals at risk of developing the disease.  The question now becomes one of deciding we should be tested or not to see if we have the genetic markers.

Is it worth getting tested?  What is the impact of having a set of results which indicates a higher risk factor for something that may or may not happen?


Additional Information:
NIH's Alzheimer's Disease Genetics Fact Sheet
Memory in Adults Impacted by Versions of Four Genes
The Nanney/Felts Family: Late-Onset Alzheimer's Genetics

Tuesday, April 17, 2012

Scarves

Grandma was usually willing to play with us when we visited, particularly when we were very young.


Grandma was born in 1911 and was a product of her time.  She had very definite views of what made a lady a lady.  She was always well dressed and put together.  She valued good penmanship and proper manners.  Scarves were one of her many accessories.

One afternoon, Lyn and our brother convinced Grandma to let them play with some of her scarves.  Grandma tied them around their heads as the two played with some favored and well-loved stuffed animals.  Lyn was delighted and found the activity very funny.

Monday, April 16, 2012

Kneeling

Lyn and Mom are very active members of their church community.  They are there for Mass several times each week in addition to their other church related activities.  When I visited this summer, it was obvious that Lyn was having difficulty kneeling during Mass.  When I visited in November, it was more of a struggle.  Mom was having to reach out to steady Lyn so she could shift into or out of a kneel.

Mom indicates that over the past couple of weeks, Lyn's balance has become more unsteady.  The assistance is no longer enough.  As of this weekend, Lyn is no longer able to kneel at all.  This is not a result of the car accident on Friday.  The inability to kneel was not a result of sore or stiff muscles.  She just doesn't have the coordination or balance to do it any more.

Mom quietly leaned over to Lyn and said "It is OK if you just sit back."  Lyn did and no further comment was made.  

Sunday, April 15, 2012

Music and Dementia

Some dementia patients continue to respond to music long after they have become unresponsive to other stimuli.  A new documentary, Alive Inside, examines this and will receive its debut this week in New York.

Here are some rough cuts from the documentary. 



Saturday, April 14, 2012

In a Car Accident

On Thursday, Lyn was in a car accident.  She's fine.  Her right arm is sore.

Lyn was with one of the day hab care providers and three other clients on their way to bowling.  They were backing out of a drive way when another driver hit the passenger back door.  The witnesses to the accident state that the other driver came to a complete stop after seeing the car was already in the street and then accelerated and caused the accident.  Lyn was seated at the door that was struck.

When the accident occurred and 911 was called, the city sent out the EMT's, a fire truck and a police officer.  Lyn was understandably quite upset; near hysterical.  When the EMT's arrived, they were able to calm her down and check her over.  Her vitals were fine.  The arm is sore.

Lyn showed them her medical alert bracelet.  They looked it over and saw Mom's contact information on the back.  As soon as they saw it, they directed the care provider to call Mom while they checked Lyn over.  It turns out that they are required to call when a medical bracelet includes a "In Case of Emergency" contact name and number.  The EMT, who Lyn says was cute and very nice, told Mom that there was no medical necessity for transporting Lyn to the emergency room.  He asked Mom if she wanted Lyn transported anyway.  Mom declined saying that they would go to urgent care if Lyn took a turn for the worse.

As the EMT examined Lyn, she was too upset to state her birthday or their home address.  A few hours later, when she was calm and back at home, she was able to state both.  She was pretty upset that she couldn't remember those pieces of information and apologized to Mom.  Mom assured her it was OK and that in an emergency we all can forget our address or birthdate.

When we ordered the medical bracelet last month, we bought it in case she wandered off or got lost.  We definitely didn't anticipate it coming into play so soon.  However, we're glad Lyn had it on.

Everyone agreed that Lyn would skip bowling this week.  She bowls with her right hand and it is her right arm that is sore.  So, here are the bowling scores for the last two weeks.

Friday, April 13, 2012

Wendy's

A big smile was flashed by Lyn as she waited to leave for work.  



She loved working for Wendy's and for a long time, she was good at it.  She stocked the cups and lids.  She cleaned the bathrooms and bussed the tables.  She kept the dining room clean and maintained relationships with the regular customers.  

The district manager knew Lyn by name.  The store manager took good care of her and helped make her work environment as positive as possible.  She wasn't always the easiest employee and towards the end, she was more difficult than not.  However, the years spent at Wendy's were extremely important to Lyn.

She took pride in her work, her interactions with her customers and her length of service.  Even now, her collection of pins is on display.  The collection is mostly pins she received from Wendy's, including one for each year she worked there.  There are a couple of Balloon Fiesta pins in there as well.

Lyn's collection of Wendy's pins
She no longer speaks about working, finding another job or missing her friends from Wendy's.  I don't know how much she remembers of her time there.  However, we remember.  We remember that she was given a chance, encouraged and supported to be a productive employee.  We remember she felt she had a place and a purpose in her work.  This is just as important for the intellectually disabled as it is for the rest of us.

Thank you Wendy's for the opportunity you gave Lyn.

Thursday, April 12, 2012

Alzheimer's and Art

In one of my regular reads of Metafilter, I came across a discussion of paintings done by William Utermohlen as he declined as a result of Alzheimer's Disease.   Mr. Utermohlen passed away in 2007, 12 years after his diagnosis.  He was able to paint for the first five years of that time.  The paintings are very interesting and worth a look.

An earlierMetafilter discussion brought up the topic of using an author's own words to see if they are suffering the effects of Alzheimer's or another dementia.

Additional Information:
Telling It Like It Is
Art Stimulates Conversations with Alzheimer's Patients
Easing Alzheimer's Symptoms with Art Therapy
Museum Programs for Alzheimer's Patients Show the Power of Art as Therapy
Longitudinal Detection of Dementia Through Lexical and Syntactic Changes in Writing: a Case Study of Three British Novelists

Wednesday, April 11, 2012

If You Need Anything

Have you ever gone through a challenging time and had someone say to you "If you need anything, just call me"?  Did you call on that person or did you decide not to even if you needed something minor like some juice from the store?  Think about when you fought an illness or recuperated from the birth of a child or grieved the death of a loved one.  Other than a spouse, partner or house mate, did you honestly call upon another person who made the "If you need anything..." statement?  If so, how did they respond?

When a friend's husband was diagnosed with cancer, I remember asking "What can I do to help?"  Her response was "Just call and check up on us every couple of weeks."  We no longer lived close enough to each other that we could just drop in for a visit.  Then as now, I was not in a position to make a physical difference.  Fortunately, making a difference to a caregiver does not require an investment of a physical or monetary nature.  Instead of stating "If you need anything...", the caregiver would benefit from us reaching out directly.
If you live remotely from your caregiver, you can help by simply placing a call and saying "I was thinking about you today..." or doing the same in an email.  If you come across an article or story in your reading that is related to an interest the caregiver has or the condition of the person they're caring for, you can share the article or story with the caregiver.  Simply reaching out to the caregiver in this way lets the person know that the current focus of their work has not removed them from your thoughts or interest.  It allows the caregiver to feel included in life outside the demands of the care they are giving.  

If you live nearby, you can additionally swing by for a quick visit, offer to pick something up from the store for them when you're on the way, or see if you can treat them for lunch.  If you were to pack a lunch and bring it to them, it is an inclusive act which is a dramatic change of pace for the care provider even if it is a small action from you.  While these ideas do have a physical or monetary component, you can still fall back on the phone call or email. 

If you visit in person or by the phone, listen.  Ask "How are you?" and then stop.  Just listen.  Let the care provider vent.  You may not be able to change whatever problem is vexing the caregiver at that moment.  The caregiver may not be asking you to fix anything.  Your gift in that moment is just listening.  

Letting the caregiver know you care and letting them feel supported and less alone takes very little effort or money.  It mostly takes a little time.

Tuesday, April 10, 2012

Baby Boomers as Caregivers

Our life expectancy has changed in here in the US over the decades.  According to the CDC (PDF), in 2006 a woman aged 35, Lyn's age at that time, could look forward to about another 46 years of life.  A woman about Mom's age could look forward to about another 24 years of life.  While we know that Lyn will not live that long, the question I have today is the impact Lyn and her care will have on Mom.

Mom is a Baby Boomer.  The Baby Boomers are currently recognized as the first generation who will care for their parents for as long as they care for their children.  Mom is being hit with being a care provider for a person in their end-stage of life for the second time.

In 1991, after Lyn and I graduated from high school, Grandma needed care and Mom stepped up to fill the need.  Grandma was mostly bed ridden but was still pretty mentally spry for the most part.  Mom and Lyn moved in with Grandma.  Mom took over the daily care for the household in addition to maintaining a full-time job and getting Lyn situated at work as well.  All of the work placed on Mom was incredibly stressful as Grandma became increasingly difficult as well.  Eventually, Grandma required so much care that she required the services of a care facility.

Looking back on it, I believe now that my Grandmother had the symptoms of early stage dementia when Mom and Lyn moved in with her.  Aside from the memory loss for recent events, there were also the personality changes.  Grandma convinced others that Mom neglected her and refused to take her out.  Grandma created conflict, threw items at Lyn and occasionally hallucinated.  None of us thought it was Alzheimer's or anything beyond normal aging since Grandma was 90 when she passed.  Was it Alzheimer's?  We never had Grandma evaluated and are unable to say for sure.  It honestly never occurred to us that it could be Alzheimer's or anything more than just old-age related senility.

Mom oversaw Grandma's care for 10 years before she passed in 2001.  During that time, Mom continued to care for Lyn.  Lyn's care demands at that time were very different than they are today.  Lyn could navigate from home to work using the city bus system.  She maintained a part-time job for 16 years in addition to her social activities and Special Olympics participation.

Unlike most other Baby Boomers who take on care of an elder relative, Mom has not had a break between caring for her children and caring for the elder.  More significantly, she has not had a break between caring the first family member in an end-stage of life and the second.  Mom  has been providing care for a family member continuously since 1969.  There have been years when the demands upon her have been less than they are now, but there has been nonstop need for someone in the family to be cared for daily.

While Caregiver Syndrome is not listed in the Diagnostic and Statistical Manual of Mental Disorders, Mom and other caregivers are at significant risk for exhaustion, guilt or burn-out associated with the continuous care of another person.  Caregiver Syndrome started being discussed openly in about 2007.  Mom is not alone in caring for an loved one after her own retirement or retiring in order to care for a loved one.  That knowledge is small consolation for her or others like her in the face of the challenges they face.

Monday, April 9, 2012

Attitude is Life Long

In case you are thinking that all of Lyn's Easters were filled with giggles and delight, let's remember that her attitude was  there from the start and a life-long aspect to her personality.

This time-out was from either 1976 or 1977.



She was not happy.

Sunday, April 8, 2012

Easter Man

Several months ago, one of my friends and I were talking about family traditions that we enjoy sharing with our children.  

She described to me one of her family traditions centered on Easter.   She sets up her home to look like the home has been visited by the Easter Bunny.  The children are encouraged to put out carrots for the Easter Bunny.  Once she puts her little ones down for the night, she sprinkles flour around her kitchen and makes bunny foot prints with her hands.  

Easter Bunny print
She hides eggs around the house and sets out a basket of goodies for each child.  In the morning, the children find just only a partial carrot on the plate.  The find the bunny tracks, the eggs and all the goodies. The children are delighted and my friend feels she has created a magical memory for her children. 

I remember very, very early in my childhood that we also set out carrots for the Easter Bunny.  We also received baskets of goodies and had egg hunts.  However, the Easter Bunny has long taken a back seat.  As sweet as he is, he just cannot compete with the Easter Man.  

When Lyn was about 6, we were at a Easter gathering at our grandparents' house when the Easter Man made his first appearance.  One of our uncles had arrived while we were out hunting eggs.  He brought a huge foil wrapped chocolate egg and tucked it onto one of the extra deep window sills.  The house had an adobe core with 18 inch thick walls.  When we came in, he teased my Mom about missing a spot on the window when she had helped clean.  My sister spun around to see what he was talking about and spotted the egg.  She excitedly declared that the Easter Man had brought it and it was just for her.  It didn't matter that the egg was unlabeled.  Lyn just knew the Easter Man had brought it.  

The carrots were abandoned pretty much from then on.  Egg hunts didn't require the Easter Bunny and they continued.  Lyn even hunted for eggs with my eldest when they came here in 2007.  As for the basket of goodies, they transformed into a center piece.  Lyn has Mom set out her largest Nambe bowl and put some Easter grass in it.  The bowl is left out overnight for the Easter Man to fill it when he visits.  

This is what I thought of as my friend told me her family traditions.  I thought of the Easter Man.

Easter Man print
He slips in the house to decorate.

Happy Easter!

Saturday, April 7, 2012

Getting in the Spirit

Lyn is happy to play along and get into the festive spirit no matter the holiday.



It doesn't matter if the occasion calls for a pair of bunny ears, a little face paint, or playing a silly game.  She's always been willing to participate and laugh along.  I love how relaxed her smile is in this picture.


Do you remember the game "Barrel of Monkeys"?  This is an Easter themed one.  She was trying to chain bunnies by their ears.  This was her longest chain at four bunnies before she got frustrated with the game.  This picture was from 2007 and the difference between these two pictures is striking to me.  Despite her frustration, she still enjoyed the day for the most part.

Please note the center piece in the lower left.  It will be explained in tomorrow's post.  Yes, it needs an explanation.

Friday, April 6, 2012

Coloring Eggs

The day before Easter is commonly a day for dyeing Easter Eggs and wrapping up final preparations for the next day's festivities.  This was as true in our family as it is with so many others.  Even now, I will spend part of tomorrow's morning dyeing eggs with my own children.

I wanted to share with you today two sweet pictures of Lyn and some Easter preparations early in her life.  In the following pictures, it is 1973 and she is two years old.  If you have children, you know that events that happen when a child is two is really the first time when they are actively participating.  Despite her developmental delays, this was no different for Lyn.  It was the first time she could help dye the eggs.

She was mesmerized and studied both the dye and the eggs for a very long time.





What is not obvious in these pictures is that both Lyn and our brother were in quarantine with the chicken pox.

May your Easter preparations be this easy and sweet.

Thursday, April 5, 2012

Spring Dresses

Each year, Mom always took us out to buy new spring outfits just in time for Easter.  It was so hard to wait until Easter to wear them.  We wanted to wear them right away.  We wanted to show them off.

I came across some pictures that brought back those memories and a smile.


I remember that pink pony puppet though I can't tell you why Lyn is looking so dubious.  At least she's not giving me The Look.  Based off the long braids, Lyn would have been about six years old in this picture.


One year later and the braids are gone.  I loved the butterfly on Lyn's dress.  It was a common motif on her early clothing which later became my early clothing.  Lyn didn't like to wear dresses but would wear one for Easter.  Today, she'll only wear one for a special event for a holiday dance.  For Lyn, being in the dress was mitigated by the excitement of the festivities.

Family festivities center around a meal with as many relatives around as possible.  It didn't matter the occasion; birthdays, Christmas, the Balloon Fiesta or Easter, Grandma and Grandpa came.  Mom's siblings and their families also frequently joined us.  My sister, being the social butterfly she is, loved these events.

Wednesday, April 4, 2012

Dementia and Vision

We know that Lyn's vision is not as good as it once was.  I previously attributed that to her age and the normal progression of vision in our family.  Most of us have to get reading glasses in our 40's.  However, I have learned that dementia also impacts vision.  In all honestly, I shouldn't have been surprised by this but I was because I just hadn't thought about it previously.  I'll let dementia educator Teepa Snow explain.

Tuesday, April 3, 2012

Interacting with a Dementia Patient

Interactions with dementia patients can be challenging.  The person may believe that something has been stolen.  She may be looking for someone who passed away many years ago.  She may be making movements or repeating actions which seem pointless to the rest of us.  The person may be arguing or seeming to not listen to truthful answers from the people around them.

These interactions can be stressful for the person's care provider, especially one, like us, who is not a professional geriatric care provider.  However, these interactions must also be confusing, stressful and isolating for the dementia patient.  From her perspective, she's making a logical conclusion that the item missing has been stolen.  She may not remember that the person has passed.  She may feel there is a purpose to her action or may not be aware that she is making repetitive motions.  While she might hear those around her speaking, her brain may no longer be able to discern the truth or follow the logic within the answer.

The dementia patient cannot stop and reassess her responses or try a different approach.  Her brain no longer has those abilities.  This task, then, falls to the care providers and the others around the dementia patient.

Teepa Snow, an educator who focuses on dementia, advocates that we don't answer a question from the dementia patient with a direct response as we would to another person.  We use the question to redirect the focus of the dementia patient.  For example,  if Lyn were to ask where Grandma is (she hasn't yet), then we would be better served to say "Tell me about Grandma" instead of "You know she died in 2001."  If this happens, then we need to step back and realize that Lyn does not know any longer that Grandma passed over a decade ago.

Another approach when working with a dementia patient is to only give a single instruction at a time.  Dementia patients can no longer keep two or more steps in focus and are no longer able to recall sequences properly.  Saying "Rinse off your plate and put it in the dishwasher" is too complex.  While it might be easiest to say "Just put your plate on the counter", the person with dementia still needs to be included and feel like she is participating in daily life.  So, a better option is to break the first statement into two different steps.  "Rinse off your plate" would be followed with the time the person needs to complete that task before the "Put the plate in the dishwasher" statement is issued.  Mom has already encountered this and adjusted accordingly.

Little changes in how you interact with the person with dementia can make a big difference.  As a change in the person's behavior becomes noticed or more frequently exhibited, the care provider can make little changes in how responses can be given to ease the isolation and unease of the patient.

Additional Information:
How to Interact with Alzheimer's Patients
Interacting with People with Dementia - What You Should Know
Caregiver Tips for Dementia Patients
Talking to People with Dementia

Monday, April 2, 2012

Her Bracelet

Last week, Lyn's medical alert bracelet arrived at my home.  After taking a photo of it to share with you, I mailed it on to her.


The open link in the center foreground is actually a safety clasp.  After Mom puts the bracelet on Lyn and pushes that V closed, Lyn won't be able to open it herself.  However, the clasp will not interfere with her movements.  We hope that Lyn quickly gets used to wearing the bracelet.  She's gotten used to sleeping with the nasal cannula already so this should be pretty easy on her.

Sunday, April 1, 2012

Meeting the Sleep Specialist

Mom and Lyn met with the sleep specialist at the end of last week.  The doctor was kind, intelligent and really listened.  At the start of the exam, he spent over 10 minutes just talking to Lyn.

Lyn loved the directed attention and was engaged in the conversation.  She allowed him to check her nose but wasn't as cooperative for when he wanted to look at her throat.  She refused to allow him to use a tongue depressor and it took multiple attempts for them to get her to stick out her tongue long enough or far enough for him to peek down.  Her uvula is huge.  She still has her tonsils and adenoids.  Both the doctor and Mom think they're probably enormous.

After the physical exam, the doctor wanted to discuss the results of the oximetry test.  When Mom said the result was 38%, he said "Do you know what that means?!"  In essence, if Lyn didn't go on oxygen, she would most likely have died within a week.

The doctor then wanted to discuss the need for the sleep study.  In order to treat the underlying cause for Lyn's dramatic drop in nightly oxygen saturation, he needs to have a sleep study done.  Mom writes:


"I explained the problem of a sleep study right off the bat to which he responded, "So what am I supposed to do?"  He understood why I was saying what I did and said it was possible for me to be there with her but it wouldn't be a good study.  I asked about mobile units and he said yes he could do that.  However, he has found them not to be as good as the others since the data is compromised if the patient gets up to go to the bathroom.  He typically uses the mobile units for follow ups."

While Mom and the doctor were discussing the need for the sleep study, Lyn became very frightened and withdrew from the conversation.  Mom continues:

"It was very interesting to see her literally pull into herself when the conversation took the turn to discussing studies.  She had been animated, happy and engaging with him.  Now she was pulling into a fetal position while sitting in the chair, even her coloring changed.  This was more pronounced than I'd seen before.  She never came out of it till we pulled in front of day hab.  He said if we change our minds about the study, just call and he'll set it up "but there's nothing he can do without it."  He can't treat the underlying cause without knowing what it really is.  He stressed to her that she keep the oxygen on all night because that will help."  

Mom had discovered on Friday morning that Lyn had turned off the oxygen and removed the cannula during the night.  Mom had turned down the monitor so she'd not hear the sound of the oxygen unit but could hear Lyn cough, snore or call out.  Lyn has stopped sleeping with her door closed and when Mom had come into the kitchen, she realized she wasn't hearing the unit.  She looked in on Lyn, found her sound asleep without oxygen.  Mom had related this to the doctor.

"I should have been aware of not hearing the little beep of the machine.  I bet she's been turning it off each night, during the night.  I'll have to be more vigilant, keep the monitor up all the way and train myself to listen better during the night."
  
After Mom related all of this to me, initially via email, we had a conversation.  If Lyn continues to refuse the sleep study, then the root cause for the suspected apnea cannot be identified much less addressed.    Even if the cause is identified, Lyn could refuse treatment.  For example, if the adenoids and tonsils are restricting her breathing, Lyn could refuse to have them removed.  We discussed Lyn's removal of the cannula during the night and the potential for death.  Mom cannot be expected to go into Lyn's room hourly to ensure that the cannula is on and oxygen is flowing.  I stressed to her that she still needs sleep for herself.  It felt strange saying "If she chooses to remove the cannula and dies, I don't want you to feel guilty or to play what ifs."

As Lyn got ready for bed last night, Mom reminded her to keep the oxygen on.  Lyn burst into tears and eventually got out the statement that she doesn't want to use the oxygen even though she knows it helps her brain.  Mom assured her she would help put it back on if she needed help during the night.  Mom turned her monitor up all the way.  We'll see how it goes.