Monday, December 31, 2012

Closing Out 2012


This past year with Lyn has been interesting.  

She went through more tests and evaluations and was finally, officially diagnosed with early on-set Alzheimer's disease.  (We still disagree with the psychologist's finding of agoraphobia, however.)  She's exhibited many changes this year and shows us that her changes are happening at a rapid pace.  This is typical of early on-set Alzheimer's.  

With the rate her changes are happening, we really cannot even speculate as to how she will be in six months from now.  So, we'll take each day as it comes and look for those moments when we can watch her laugh at Nikka or where we can laugh because of something she's done.  Those moments really are treasured because they lighten an otherwise challenging day.

What I do know is that in 2013, Mom and I will continue to speak several times each week.  I will continue write Dementia be Damned and look for Alzheimer's news to share.  Mom really shoulders the burden of Lyn's care and I will continue to do what I can to help.  Some days, it feels insufficient.

I'm proud of my Mom for all she does for Lyn.  I cannot imagine the difficulty of watching your child struggle with a terminal disease, knowing your child will die before you.  Mom knows what she's facing as she dealt with much of this with my Grandmother in the 1990's.  The ironic part of our conversations about Lyn and what she's experiencing is that we find commonalities.  There are behaviors that my 41 year old sister with Alzheimer's has in common with my 6 year old child who has PTSD.  These commonalities never cease to strike us and we find that they allow us to understand each other and our daily lives a bit better.

So, as 2012 comes to an end, I hope you will continue to read and share Lyn's journey with us.  It amazes and pleases us greatly when someone comments on something they've read here.  Thank you for that.

May the New Year bring you happiness!



 

Friday, December 28, 2012

Wintery Beach



Virginia Beach - mid 1990's
Even the cold wind off the Chesapeake Bay could not stop Lyn from watching the waves.  She's always been drawn to the water.


Thursday, December 27, 2012

Cavalier

When we lived in Virginia Beach, Mom and Lyn came out to visit us at Christmas a couple of times.  One of the things we liked to do was visit the beach front even in winter.  While the majority of the shops were closed, there are a number of places that stay open all year.  One of them is the Cavalier Hotel.

It is a grand old hotel that was built in the mid-1920's.  Decades later, a sister hotel was built across the street.  Annually, the chefs for the hotels work together to build a gingerbread version of the original hotel.  The gingerbread version is truly impressive at nearly five feet to a side.


Lyn enjoyed going to the hotel to look at this creation.  She would exclaim over the details, pointing out the different candies she could recognize and the different details around the display.

This is one of the pictures that Lyn took during one of our visits.

Wednesday, December 26, 2012

Human Anatomy

Buying presents for Lyn is always a challenge.  She used to like math work books and puzzles.  She has hundreds of pencils and dozens of shirts.  She's particular about what she likes and obvious about what she doesn't.

We usually start pretty early in the fall asking what she'd like for Christmas.  She would tell us her desired gifts and we'd take note.  It was usually one of the items listed above so it was pretty easy even if it was repetitious.  Then there was the year in the mid 1990's that she announced she wanted a book about the body.

I asked several times to make sure that I understood her correctly and she remained steadfast in her desire for a book.


And that's exactly what she got.  She was happy.

That was actually a good year for her as far as presents were concerned.  She was happy with all she received.  She still uses that robe and eventually wore out the Tigger slippers.  She still has the book though I don't think she looks at it any longer.

Update:  This year was also good.  She was pleased with her presents and seems to particularly like the stuffed PBR bull that I found for her.  Dementia is making her harder to buy for, but she was giggling over the toy while telling the dog "No.  This is mine!"

Tuesday, December 25, 2012

Merry Christmas

Christmas 1989
May today fill your home with peace and happiness.
May the obstacles in your path be cleared.
May you find joy and love in those around you.

From my family to yours,
Merry Christmas!

Monday, December 24, 2012

Define Long-Distance

Yesterday, Mom, Lyn and I had our regular Skype conversation.  Lyn was a bit put out and decided to express her discontent.

Mom had a phone call from a friend in Scotland the night before.  Lyn was watching TV and Mom took the call into her room for a little privacy.  This made Lyn mad.  She was angry that Mom was "tying up the line."  She didn't want Mom to talk in the other room.  She wanted Mom to sit with her while she watched TV.  Lyn's gotten a little more cantankerous when Mom's on the phone with me.  She'll frequently tell Mom that I'm "tired and must go now."  It is her attempt to get Mom off the phone.  Lyn prefers to be the center of Mom's attention at all times.

I asked Lyn if she new that our phone calls were long-distance.  She told me that our calls were "sometimes long-distance."  I asked if it was OK for Mom to talk on the phone or if that bothered her.  She said it was OK.  She then went into detail how it was not good for Mom to talk on the phone to Scotland for so long because it was MORE long-distance than our calls.

Neither Mom nor I could argue with that.  We both got the giggles.  We assured Lyn that she was absolutely right.  Scotland is further from New Mexico than Virginia.  Lyn was adamant.  Fortunately, she wasn't offended by our laughter which quickly went from giggles to full guffaws.

I really enjoy these moments of spontaneous hilarity.  I'm sure that my recounting it does not do it justice.  However, when she's insistent and the demand is absurd, it is better to laugh than get upset about it.  Lyn's logic is all hers.  It doesn't have to make sense to the rest of us.

Friday, December 21, 2012

Three Day Tear

Lyn's been in a mood for the past couple of days.  Mom has no idea why but it is like Lyn's looking for a fight.  In all honesty, it is the dementia talking.  We just don't know what set her off this time.

She was happy to see our Uncle when he came for a visit.  However, she wasn't thrilled that the visit included more than just him.  Within five minutes, she decided it was her job to make sure his 4 year old grandchild didn't get into anything.  The child was very well behaved but Lyn didn't even want the child to come near the Christmas tree.

Mom's neighbor is out of town and asked Mom and Lyn to collect the mail.  The neighbor called and asked Mom to open a package to confirm that a particular item had actually arrived.  Mom opened the package and then returned it to the bag with the rest of the mail.  When Lyn put the daily mail in, she came out and got quite upset with Mom.  Mom had to calm her down before Lyn could accept that the neighbor had requested the package should be opened.

Last night, when I called to check on them, Lyn announced to Mom that I was "tired and had to go."  This announcement is usually reserved for after Lyn's had her conversation with me.  During this call, she didn't want to talk to me and kept pushing for Mom to get off the phone.  Mom acknowledged to Lyn that she was right because I was yawning and clearly tired.  However, we kept talking.

On days like this, Mom tries to confirm to Lyn that she is heard and her comments are understood.  She tries to redirect Lyn and to not respond with anger.  It is hard though to have someone being so openly critical and attempting to control your actions.  But, it is the disease talking and in a day or two or three, she'll be less confrontational.

Thursday, December 20, 2012

Lemon Oreos

It is the time of year when New Mexico is garnished with fresh cut pine boughs and lemon oreos.

In front of El Pinto

Traditional lemon oreos only show up on Christmas Eve and are used to light the way for the Christ Child to enter your home.  My husband likes to tease that they're just candles in bags.  Many places now use the plastic, plug-in variety to decorate with them longer into the Christmas season.

Lyn can't say luminarias and has called them lemon oreos for as long as I can remember.  The first time we remember her saying "lemon oreos" was the time we spent Christmas Eve in the long line of cars slowly creeping through one of the large graveyards in town which had been decorated with thousands of luminarias.  It was 1979 or 1980.  We only did that tour once.

When I was with Mom and Lyn last week, we went to dinner at El Pinto, a long-time family favorite.  The restaurant was covered in the luminarias and greenery.  It was lovely and Lyn was happy to pose for a picture.

We don't correct her pronunciation.  We kinda like that she calls the luminarias "lemon oreos."

Wednesday, December 19, 2012

Santa's Message

Once again, I used the services of the Portable North Pole to craft a message for Lyn from Santa.  To say it was a big hit was an understatement!

She was so excited that she was literally on the edge of her seat, nearly tipping the chair over.  Her jaw dropped when she saw that he had a picture of her and said that he remembered her from when she was little.  She knows that I asked him to contact her because the video tells her.  However, she doesn't understand that the video is the result of selecting prerecorded options.  That's OK.  She doesn't need to understand.

She gets so excited and is just so happy about these little videos that I'm happy to have this service available to use for her.  It makes her day each time she watches it.  She may not watch the classic holiday specials any longer, but this is still magic.  As long as Santa's message evokes this in her, I'll keep doing it.

Tuesday, December 18, 2012

Cha-Cha-Cha-Changes

I was with Mom and Lyn for a week this summer, less than six months ago.  Six months in the progression of early on-set Alzheimer's is plenty of time to notice differences.  Here are the differences that I noticed with this trip:

  • Lyn asks for help when having to tie her shoes.  She doesn't do it all the time, yet.  When she does, she tries to cover it by saying that she wants the knot in the center.  I don't remember a time when she actually tied her shoes with the knot in the center.  It has always been off to the side.
  • Lyn doesn't always know how to use a knife now.  During dinner, she tried to spread butter on her roll using her finger.  When Mom directed her to use her knife, she looked confused and just put the bread in her mouth instead.  While I didn't see it directly, Mom commented that Lyn is asking her to cut her food for her more and more often.
  • Lyn prefers the spoon to the fork.  When she holds the spoon, it still sits easily in her hand.  When she holds the fork, she's got it clutched in her fist and has to turn her hand to an odd angle to get the food to her mouth.  She will only use the fork on meat now.  All other food is either eaten using her hands or a spoon.  
  • Lyn's smell is becoming more pungent.  Her clothes are clean and she still bathes daily.  However, her toileting requires the fan for some time after she's done; even if it is just to urinate.
  • Lyn's speech is generally more monotone and carries less inflection.  However, she still uses a tremendous amount of inflection when talking to Nikka.  She actually almost uses baby talk to the dog.  
  • When she wants to tell you something, she rushes through it like she's trying to get the thought out before she looses the thought.  The more important the thought is to her, the more she'll rush and the more likely she is to repeat herself.  
  • Lyn's walking is even more unstable.  Her feet really slap the ground even though she's not walking quickly.  If I didn't know better, I would have thought she was stomping.  She's not aware of this change in her gait but it is like she's trying to remain firmly planted at all times.  Her movements are slower and tentative.  It reminded me of how I moved after delivering my eldest child who broke my coccyx.  She doesn't seem to be in pain, fortunately.  It is strange to see this caution combined with such heavy footfalls.  
  • She has greater difficulty getting up off the floor where she likes to sit with the dog.
  • Lyn doesn't notice if you move things away from or in front of her when she's not looking.  It is as if she assumes she took the action herself.  
  • Lyn regularly complains that her scalp hurts.  She reaches for the same general location at the top right of her head.  There is nothing there that we can detect.  There is no bump, scratch or even an infected hair follicle.  We have no idea and I wonder if it is internal.
  • Lyn's diet continues to become more restrictive.  Peas and carrots are about the only vegetable she will eat.  Chicken or pork chops (boneless) have to have no seasoning.  Plain rice, boiled potatoes or french fries are her preferred starches.  She does still each spaghetti but not as much as she has historically.

Monday, December 17, 2012

Back in the Saddle

The past few days were spent in New Mexico with Mom and Lyn.  It was a short trip but well worth the effort.  I arrived late Tuesday night and was only able to stay until early Saturday.  However, my time was primarily dedicated to Mom.  My job this trip was to just be there for and with her.

We chatted and laughed.  I washed her dog and helped clean spilled butter off the floor.  I distracted Lyn and got her to focus on me for a bit.

Lyn asked me if I wanted more placemats.  I added two to my carry-on.

She asked if she could show me her rubber stamps.  We looked at all of her large ones.  When I asked if she wanted the container with the minis, she was dismissive of them.  I waited until she went to the bathroom and retrieved the mini stamps.  She didn't bat an eye over their sudden appearance.  We looked them over and she ended up making a Christmas card for my husband.  She even used the mini stamps, many of which had never been used before.

In between, Mom and I chatted and laughed some more.  It was definitely worth the travel.

Wednesday, December 12, 2012

Growing Confusion

Lyn's confusion is growing and she's less and less likely to know what she did in her time out with her respite provider.  On Saturday, for example, when Lyn returned home, she was confused.  She knew there was a holiday dance this Thursday but she did not know that she and her respite provider had just visited the respite provider's grown daughter who wants to curl Lyn's hair for the dance.  When Mom asked what they had done during their time out, Lyn responded with "I don't really remember."

At that point, Nikka came into the house and was spinning circles in her excitement that Lyn was home.  Lyn started laughing at the dog's antics and quickly forgot the previous confusing conversation.

Tuesday, December 11, 2012

And I'm Off


I'm en route to New Mexico today.  I'm fortunate enough to work for a company which is well set up for telecommuting.  My manager and the majority of my team all work from their homes.  As a result, when I asked my manager if I could work from Mom's house, I was given approval.  So, right after work today, my husband will drop me at the airport and I'll spend the evening hours flying to Mom's.  

A year ago, I told her not to get used to a mid-holiday visit when I flew out.  I reminded her of that again this year when I purchased my tickets.  I'm not sure either of us was really listening.  As much as we enjoy the summer visit with my children and husband present, there's a different quality to the visit when it is use the three of us girls.  

Lyn's very excited that I'll be there this week.  She knows I have to work while I'm there.  She doesn't know that I'm actually taking Thursday and Friday as vacation days to just hang out with them.  We really want to keep her schedule as normal as possible because she does better when her day is as normal as possible.

Monday, December 10, 2012

All the Jumping

Yesterday, Mom and Lyn attended the performance of the Nutcracker Ballet at the Kimo Theater.  It was a big hit with Lyn.

They arrived a little early, allowing them to park in the garage less than a block from the theater.  They were allowed into the lobby and had a half hour wait before the doors to the auditorium were opened to allow guests to find their seats.  The theater staff were selling mementos related to the performance; nutcrackers of various sizes, ornaments shaped like dancers and ballet shoes.  Lyn bought a pair of socks with nutcrackers on them.  She's very happy with her purchase.

Mom writes:


When the ballet started she sat up straight and leaned forward a bit.  Our seats were perfect, last row, seats at the aisle.  She LOVED it.  She applauded when others did and oohhhed & ahhhhhed quite often.  For 2 hours, she was enthralled with it all.  When it ended, we were able to be one of the first out of the theater and headed to the car.  She was cold and the wind must have been 35-40mph.  I had parked close to the entrance so within 2 minutes, we were out of our seats and back in the car.  

On the way home I asked what she thought and she said "I loved it and want to go next year."  What did she like the best?  "All the jumping."

There's another ballet in Feb, The Wizard of Oz and I think I'll get tickets.  



Friday, December 7, 2012

TN

Mom and I both have Trigeminal Neuralgia (TN) which is usually in remission.  Mom is wading through a nasty bout currently and the pains are coming in waves.  The pains can be debilitating and interrupt every aspect of your life including sleep.

The other night, Mom had a particularly rough time in the small hours of the morning.  The stabs of pain were coming almost in time with her heart beats.  After about two hours, she was out again.  She doesn't know if she fell back to sleep or if she passed out from the pain.  When next she looked at the clock it was 8:15.  Nikka was still on her bed.  Mom got up and found Lyn already fully dressed and ready.  Mom hurriedly dressed to take Lyn to day hab.

During the ride, she asked Lyn if she had come into the bedroom to check on her.  "Yes, but I knew you needed to sleep."  Mom asked Lyn to try and wake her in the future.  If Mom doesn't wake up, she's to call 911.  Lyn got mad at that suggestion.  That night, Lyn asked if they were both going to bed early.  Mom agreed they were and reminded Lyn to call 911 if she doesn't wake up.  Lyn just grunted in response.

Mom set her alarm for a 7am start.  She was able to get up and was having less pain that day.  A few minutes later, Lyn came down the hall and spotted Mom feeding Nikka.  Lyn announced "At least I don't have to make sure you could wake up!"  She flipped around and marched back to her room.

Mom and I both laughed over this.

Thursday, December 6, 2012

Migrations

My grandparent's home was in the South Valley, right beneath the migration route for the Sandhill Cranes.  Twice a year, the cranes fly along the Rio Grande and we'd hear them calling to each other.  (That woke my dogs up.)  Our grandparents taught us to listen and pay attention when we heard their calls.  As soon as on of us heard them, the house would empty as we all would hurry outside to watch them fly on their way to winter in the Bosque or to spend the summer in Nebraska or further North.

Sandhills flying towards the Bosque.
Photo by Lauren Hurtgen.
Used with permission
  In the 1980's there was a failed attempt to raise endangered Whooping Cranes with the Sandhill population in the hopes that they would establish a new breeding colony.  During that time, we could easily spot the great white birds flying among the smaller Sandhills.  The Whooping Cranes imprinted on the Sandhills and never bred with others of their species as a result.

Lyn loves the cranes and still recognizes their calls.  The home she shares with Mom is no longer directly in their flight path but she'll still respond when she hears them.  She move to get the largest view of the sky and starts looking up.  She was delighted that she got to see several Sandhills when she and Mom visited the Bosque last month.  

Birds still engage her attention.  It doesn't matter if it is the little hummingbirds that peer in the windows after they chase off competitors, the noisy and greedy flocks of finches, the hawks, roadrunners or the cranes.  If she is aware of them, she'll watch and enjoy them.  She'll tell me about the hawk and if he's plucked his catch in their garden again.  It is pretty fun to watch her watch the birds.

Wednesday, December 5, 2012

Nutcrackers

Lyn loves the The Nutcracker Suite.  She'll put the music on and listen to it any time of year.  During December, when The Nutcracker Ballet in its myriad forms are aired, she will watch all she can as long as they're at least half-way traditional.  A rock and roll version with motorcycles just won't cut it for her.

When we were growing up, we'd catch the version with Mikhail Baryshnikov and watch it each year.


For the past several years, Lyn has been able to go to a live performance at a local theater.  This year, Mom got them tickets for the Ballet Repertory Theatre of New Mexico's performance at the Kimo Theater.   When Mom purchased the tickets, Lyn promised to not get sick.  She is looking forward to this year's performance.

Tuesday, December 4, 2012

A Very PBR Christmas

Lyn's difficult to shop for and is playing a bit coy this year.  She apparently already told Santa what she wants for Christmas.  When Mom asked her what she told him, Lyn just tells her "Let's just wait and find out what Santa brings me."  I think that's just her trying to cover that she either doesn't know what she wants or doesn't remember what she has requested.  We do know she's asked for a pencil.

There's a part of me that feels like I should get Lyn more for Christmas than what is on its way.  There's another part of me that recognizes that she's actually going to be thrilled about her Christmas gifts.  Well... I hope she'll be thrilled.

Lyn has a deep love for the PBR and all the riders.  She keeps her signed programs from previous PBR events in Albuquerque easily accessible and can get them out in a flash.  Knowing this, Mom suggested we get Lyn a PBR shirt for Christmas.  I've ordered one and hope it arrives in time.  However, I wasn't sure that a single shirt was a good enough gift to make her happy.

Much to my surprise, the PBR doesn't currently sell plush bulls.  It just seemed like an obvious piece of marketing to me.  I'm not in Marketing so my opinion is irrelevant to a company looking to make money.  However, I did find one from an earlier year with its original tags still attached available on ebay.  It should arrive in time for me to take it to NM before Christmas.

Fingers crossed that she likes her PBR Christmas gifts.

Monday, December 3, 2012

TEASC Check In

After Lyn's visit with the neurologist last week, a member of the TEASC committee happened to call and check up on her.  The committee had committed to checking with Mom "in a few months" to see how things were going and how they could be of additional service.

The caller was the therapist on the team.  She asked if Mom had questions.   Mom let her know that Lyn was doing OK.  She has good days and bad days.  Mom did raise the question about the agoraphobia diagnosis.  The therapist said that she didn't know why the previous diagnosis of atypical Sundowner's was dismissed in place of a diagnoses of agoraphobia.  "Perhaps the team misunderstood" what we were telling them.  Lyn's not afraid to leave the house or engage in social situations.  In fact, she is quite the opposite.  She's out of the house 6 days a week and looks forward to going out.  Lyn becomes uncomfortable and somewhat anxious when out after dark.  The therapist agreed that this didn't sound like agoraphobia.

The therapist has promised to check with the team and call back.  Mom wants to get this corrected because, based on this report, Lyn's primary health care provider is listing agoraphobia as the diagnosis having deleted the Sundowner's diagnosis.  She explained to Mom that she defers to this committee's findings even though she doesn't agree with it.  The impact of this is that it could substantially change how the State manages Lyn's case.

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.

Wednesday, October 31, 2012

Guess

One of us is in costume for Halloween.  One is not.  I'll let you guess who is in costume.


Happy Halloween!

Tuesday, October 30, 2012

After the Storm


After Hurricane Felix moved on and stopped threatening Virginia in 1995, we were able to resume our vacation plans.  We had planned to visit the Chrysler Museum in Norfolk.  Since the hurricane did not come ashore, we were able to visit without having to contend with downed trees, damaged buildings or flooding.  One thing we did not anticipate, however, were jelly fish.  

We arrived at the Chrysler Museum.  The Chrysler sits on a small inlet.  We walked over to the water's edge and noticed some movement in the water.  The water was packed with jelly fish.  There were thousands sliding over each other in the calm water in front of the museum.  

Checking out the jelly fish
Lyn was fascinated with watching them and we stood there for some time.  We tried to take pictures of them but none of them were ever good enough to show what we were seeing.  

Monday, October 29, 2012

Weathering the Storm

Mom and Lyn are safe and sound in New Mexico.  They are starting to feel the creeping chill of winter coming on, but they are not impacted by Hurricane Sandy in any way other than wondering how my family and I are weathering the storm.  In our Skype conversation on Sunday, Lyn burst into tears when asking if we were adequately prepared and offering advice on having extra water on hand.  I promised her that we would call them each day until Sandy passes to make sure they know we are well and safe.

Mom has been through a hurricane or two in her life and she doesn't like them at all.  When my husband and I lived in Virginia Beach, we went through several.  In 1995, Hurricane Felix  threatened to come ashore while Mom and Lyn were visiting.

Waiting for Felix

It was nerve wracking for them more than it was for us.  Felix ended up staying out at sea and Pat Robertson claimed he had prayed it away.  It was enough of a storm that Mom and Lyn have mostly timed their visits to the East Coast to happen outside of hurricane season each year ever since.

The last significant storm that my family and I experienced before Sandy was Hurricane Isabel in 2003.  It was the last hurricane before we moved further North and further in-land.  It was the first time in years that Mom and Lyn were trying to come in for a visit during hurricane season.  We were without power for 8 days and Mom was seriously contemplating canceling their trip as a result.  I convinced her the power would return before their arrival.  It did.  Just hours before they arrived, the lights came back on and we were able to have our first hot showers in a week.  It was a luxury!

Mom and Lyn are not coming to the East Coast anytime soon.  However, they'll be paying close attention to the news and tracking the storm over the next couple of days, hoping and praying that those of us who are hunkered down in our homes for the duration remain safe and sound.

Friday, October 26, 2012

Oligomers

 Individuals with Alzheimer's have amyloid beta plaques built up in their brains in addition to the atrophy of the brain.  The plaques have been a primary focus of much of the research into the disease.  However, one of the great mysteries of Alzheimer's is how individuals who have lots of amyloid beta plaques in their brain can have normal cognitive functions and little if any atrophy.  When this was discovered, it provided another path of study to examine.

Brain samples needed to be collected from individuals with Alzheimer's disease and those without symptoms of Alzheimer's prior to their death.  The samples from the apparently healthy individuals had to be examined to find those with high concentrations of amyloid beta.  Once those were identified, scientists could then look to see what else was different between the two groups of samples.

Recent findings indicate that there is a difference in the concentration of oligomers in the two groups.  An oligomer is a large molecule consisting of a very few bonded molecules of the same type.  There are many different types of oligomers such as those found in oils, proteins or nucleic acids.  In this case, the oligomers are actually amyloid beta molecules which have bonded together in small groups but have not bonded enough to form plaques.  The individuals who had been diagnosed with Alzheimer's had amyloid beta oligomers in their brain in addition to the plaques.

Just one more piece of the puzzle.


Thursday, October 25, 2012

World Alzheimer Report 2012

Alzheimer's Disease International released the World Alzheimer Report 2012 to correspond with World Alzheimer's Day/Alzheimer's Action Day (Sept 21).  I just found the report today.  This year's report focuses on the stigma associated with  dementia and how dementia is viewed around the world.  In addition to reporting on the organization's findings, the report provides suggestions on how to break through the stigma we face as caregivers as well as individuals with dementia. If you don't want to read the full 80 page report, then check out the executive summary which may be easier to digest at 14 pages.


We've touched on the stigma surrounding dementia in our lives.  Fortunately, what we have experienced is nothing compared to others.

Wednesday, October 24, 2012

Apple Sauce

Every fall, Mom makes apple sauce.  It is thick and chunky and wonderfully spiced.  It was like magic when she would whip it up in our youth.  There always just happened to be too much apple sauce for the prepared jars and we'd have to have the hot apple sauce ladled over the vanilla ice cream which just happened to be in the freezer.  Magic, I say.

It is that time of year and the magic is happening again.  Mom writes:

Last week, I had half of the big bag of apples left from our trip to the Manzanos.  I had been to the grocery store and almost bought the single serving packs of applesauce for her lunch.  I stopped myself when I remembered we have apples.  So, I came home, cut them and cooked them up, peelings included.  She wanted to know what I was doing and I said "Making applesauce."  She looked a little surprised but didn't say anything.  She wasn't to be picked up for Merry Makers until 6pm.  This gave her time to come and supervise.  As they cooked, I prepared the jars.  When I began running the cooked apples through the processor, she "wondered" if I was going to put sugar and cinnamon with it.  Yes, I promised I would. 

When it was done, 5 pints, I did the water bath.  There was about 1/2 pt that went in a bowl for the fridge and I offered a taste.  She took it and a look of shock!!!! "I had no idea you knew how to make this."

Sorry I've never made applesauce.  Well, hadn't made it in about one month.

Tuesday, October 23, 2012

A Sunny Seat

Some days, you just have to set the research aside and enjoy a sunny spot along the path.


Monday, October 22, 2012

DIAN Trial

The Dominantly Inherited Alzheimer's Network (DIAN) is an international group of researchers focused on understanding a genetic cause of Alzheimer's in the hope that their findings can be applied towards those who suffer other forms of dementia.  The network is conducting a study to see if they can identify biomarkers of Alzheimer's from the adult children of individuals who have been diagnosed with an inherited form of Alzheimer's.  The study began in 2009 and will be completed in 2014.

It will be several years before the study is finished and more years before the results can be integrated possible treatments.  However, the researchers and study participants hope to help find a possible treatment for the disease.

Additional Information:
Catching Alzheimer's Early: The "Dian" Trial
Investigational Drugs Chosen for Major Alzheimer's Prevention Trial

Friday, October 19, 2012

Team Meeting

As I mentioned yesterday, Lyn's team got together to discuss the TEASC recommendations.  In attendance were Lyn's speech therapist, two ladies from day hab, two case manager, the nurse from the agency which provides the case management, Mom and Lyn.  

They started off the meeting by saying that the TEASC report is considered an official document that bears weight in Lyn's case management.  They then went through all of the findings and recommendations and discussed each one.  

When they discussed the TEASC's finding that Lyn has an anxiety disorder such as agoraphobia, the team was a bit surprised that Mom stated she believe that one to be incorrect.  She pointed out that there have been multiple statements from Lyn's care providers that she has atypical Sundowners.   A therapist who has known Lyn for over a decade  happened to call last week to check on her and also disagrees with the agoraphobia suggestion.  

The team has agreed that Lyn should be seen by a geriatric neurologist who may help them better understand the course of her Alzheimer's progression.  (Mom has already called to get Lyn scheduled.)  They also agree that there's no reason to repeat an MRI.  However, they are seriously considering repeating the EEG and the neuropsych evaluation within a year to compare to the ones done a year ago.      They will all look for opportunities to increase Lyn's exercise in a manner to which she will cooperate and participate.  Mom will continue attending the Alzheimer's support group monthly.

The primary recommendation for which there was disagreement was in the use of medication to slow the progression of Lyn's Alzheimer's.  Lyn does not want to take medication.  Period.  Full stop.  Mom doesn't see a reason to slow the inevitable.  Lyn has a terminal condition for which there is no cure.  Several members of the team stated that the meds would help keep Lyn as high functioning and independent as possible.  However, the meds do not work for everyone and carry significant risk of serious side-effects.  

The truth of the matter is that early on-set Alzheimer's is aggressive and is progressing with Lyn as we speak.  Most recently, Mom has realized that Lyn has had a significant hygiene change that is impacting daily life.  When Lyn goes to the restroom, Mom has to send her back 2 to 3 times to go clean herself properly.  If she's menstruating, Lyn wouldn't even change her pads until bath time if she wasn't reminded to do so every couple of hours.  

It is hard to say where Lyn's capacity will be in 6 months.

Thursday, October 18, 2012

The Stay Calm Book

On Tuesday, Lyn's team gathered together to have their monthly meeting and to review the TEASC recommendations.  During the meeting, Mom was telling them about the weekend trip up to Jemez and how Lyn got nervous at the end.  Mom stated that she doesn't want Lyn to dictate the agenda 100% of the time which is why she didn't turn around when Lyn said she wanted to go home.  Lyn decided to interject and came up with a great idea.  I'll let Mom explain.

Mom writes:
She interrupted, in a loud voice, "you know what we could do?"  Everyone turned and looked at her as I asked "What?"  She said, "We could make me a book with pictures where we are and I could look at it while we drive."  You could all but see lightbulbs go off over all of us.  I said that was an excellent idea.  "What things would you like in it?"  She wants pictures of where we are going.  I said I was glad someone was smart and could think of such a great idea.  I got The Look.  Her speech therapist told her that was one of the best ideas she'd ever heard.  We decided on Sunday we'll go find a book. We will pick out pictures and glue them in it.  When we go someplace, she can look through the pictures and get an idea what to expect.  She said "It will calm me down."  There was a picture in the paper of trees turning colors and she wanted that one cut out since it looked like the trees in Jemez. We will go thru some photos as well.


Wednesday, October 17, 2012

Digital Clock Drawing Test

Researchers at Georgia Tech have come up with a digital version of the clock drawing test.  The clock drawing test has been around for some time and is a pretty quick and easy way to see if a patient has a cognitive impairment.  Their research (PDF) lead them to write the ClockReader System to allow an individual to take the clock drawing test without the need for another person to be present for the administration or evaluation of the test.  This will allow patients to be tested regularly for signs of disease progression.

Tuesday, October 16, 2012

The 26 Mile Yard Sale

Lyn accompanied Mom and their lovely neighbor up into Jemez yesterday.  They wanted to see an arts and craft show and initially didn't know about the 26 mile yard sale until a lady mentioned it at the craft show they attended recently.

The yard sale began in San Isidro where you turned off the highway to go north to Jemez.  They didn't know what to expect and found yard sales at houses every mile or so.  The 26 mile yard sale was a coordinated event to bring folks up that route where they may not normally go looking for a yard sale.  They didn't stop because they were looking for the art show at the Jemez visitor center.  The visitor center had several tables set up for the artists.  At one table, Mom commented to her neighbor that the pottery for sale was actually Acoma in origin.  The artist confirmed saying she was from Acoma but lived there in Jemez.

After viewing the items up for sale, they went on into Jemez springs and stopped at a little coffee shop for lunch.  The place was busy and had wonderful food including bison burritos and tortillas that were red from having tomatoes incorporated into them.  As they left the coffee shop, Lyn commented that they didn't need to continue on.  She was ready to return home.  Mom let her know that they were going to continue North at least to Soda Dam which Lyn has visited numerous times in her life.  Lyn agreed to go that far.  As they drove past the dam and saw the people climbing on the rocks, Lyn told Mom she could turn around now.  Mom deferred a few more minutes because she and the neighbor were enjoying the colors around them.  Jemez has such red soil, the leaves were changing and the sky was that distinctive blue for which New Mexico is known.

Mom started looking for a place to turn around shortly after passing the dam.  She had glanced back and noticed Lyn was getting nervous.  By the time they had retraced their steps and gotten back on the highway to return to Albuquerque, Lyn was shaking.  They were home by 2 in the afternoon.

It seems like Lyn's retracting from the world a bit more.  Previously, she would not have gotten nervous until late in the afternoon.  Now, she's less willing to travel out of Albuquerque unless they will be returning home right after lunch.  She's also spending less time out with her respite provider.  Her new normal has her coming home about 7pm instead of 8 or 9 and being ready for bed right away.

Monday, October 15, 2012

Another Area Games

On Saturday, Lyn competed once again in another area games.  She and Mom had to be out at location by 7am and had to factor in the traffic from the balloon fiesta.  By taking a more Westerly route, they were able to avoid the balloon related traffic.  As they were driving, they got to watch the dawn patrol confirm the conditions were right for mass lift-off and the first wave of balloons raise into the sky with the sun.

Mom watched each game, praising each frame.  Mom comments, "Oh, the changes I could see in what she did & how.  I praised each frame.  She stood sideways, didn't look to see where to throw it and just threw.  But she had fun and is proud of herself and that's all that counts."  

Lyn had three games to bowl and did quite well.  She scored a 134, 97 and 114.  Her scores were good enough to bring in a second place ribbon!  She had fun and was excited to participate.

They were done by 10am and were looking for a meal.  By noon, they were back home, heading for a nap.  It was a great morning for Lyn.

Friday, October 12, 2012

Indecision

I spoke with Mom and Lyn the other day on the phone.  They were checking up on a couple of cold in my household.  I heard several moments of confusion in Lyn's voice.

It turned out both the washer and dryer finished their cycles at the same time.  Lyn didn't know what to do.  Mom had to walk her through the steps to remove the clothes from the dryer before transferring the load from the washer to the dryer.  Mom passed the phone to Lyn and Lyn spoke to me while Mom initiated a new dryer cycle.

Multiple demands for her attention now overwhelm Lyn.  Mom has to break the tasks back down to more manageable units for Lyn to process.  Two months ago, the two machines shutting down their cycles at the same time would not have been too much for her.

Thursday, October 11, 2012

Bell Tower Supports

In the spring of 2002, Sacred Heart Parish in Albuquerque requested a two I-beams from the remains of the World Trade Center buildings in New York.  The church was preparing to build a new bell tower and wanted to incorporate the beams into the building.  It was apparently the first such request for salvage pieces to be incorporated and memorialized in a new structure.  Many new structures have since been built incorporating September 11 steel.


When the beams arrived in Albuquerque, they were set up in a parking lot across from the church so that visitors could come and see them.  Mom and Lyn went one afternoon before they were incorporated into the new bell tower.  Lyn didn't understand the significance of the beams and was just along for the opportunity to be out and about.  When Mom reached out and touched the beams, Lyn commented "You look so solemn."  Mom was deeply moved even though her companion was not.

Wednesday, October 10, 2012

Solanezumab

Earlier this summer, pharmaceutical company Eli Lilly announced their results from phase III trials of their drug solanezumab.  Yesterday, they announced that their findings have been independently confirmed by ADCS.

The results are not what Eli Lilly had hoped to announce because the drug did not achieve the goals Eli Lilly set for the tests.  Solanezumab, a monoclonal antibody, was targeted to slow the rate of neurologic decline as a result of Alzheimer's Disease by removing the build up of beta amyloid.   However, there was a slowing of the cognitive decline noted in trial participants who had mild Alzheimer's.  In other words, solanezumab may actually have a moderate clinical benefit.

Additional Information:
Mixed Phase III Results for Solanezumab in Alzheimer's Disease

Tuesday, October 9, 2012

Like New

Yesterday morning, while waiting for speech therapy to begin, Mom and Lyn got to watch the balloons fly towards their house.

A large blue balloon landed in the field about a block away from their house and Lyn was just beside herself with excitement.  She took a picture.  The passengers in the balloon disembarked and more loaded up from the chase crew vehicles.  A few minutes later, the balloon lifted off and continued on its way.  Lyn wanted to know if they knew anyone who was on the balloon.

The balloons flying over the house were a great distraction for Lyn.  She couldn't focus on her therapy session until Mom lowered all the shades.  They were all around the house.

After therapy, they had to drive over to day hab.  There were still several hundred balloons in the air.  Lyn was so excited that she was shaking in the car ride over.  She kept pointing out all the balloons that she was spotting.  Mom says the delight in her face, the dancing of her eyes was like someone who had never seen the fiesta before.

Most mornings, Lyn looks out the patio door to count how many balloons are up.  Typically, there are anywhere from 2 to a couple of dozen at any day of the year.  Lyn's seen the balloon fiesta nearly every year of her life.  She's had hundreds of balloons fly over the house.  This is true of the current home, my grandparents home and the home where we grew up on the other side of town.   So, it is not like she's never seen this.

It is good to know that the balloons still evoke such delight and excitement in her!

Monday, October 8, 2012

On the Go

Lyn has been on the go this week.  In addition to day hab, she had her regular bowling afternoon and did quite well.


During one of the day hab activities they decided to go bowl a single game.  They hadn't really planned it in advance and Lyn wasn't prepared with her own ball or shoes.  She was angry and did poorly.  It was the first time one o the other day hab attendees had beaten her.  He was elated!

The weekend ended up being busy as well.  The International Balloon Fiesta has started and she's been able to see the mass launch on Sunday.  (Saturday's was scrubbed due to weather.)  She will be attending the special shapes balloon glow later in the fiesta.

Lyn, Mom and their lovely neighbor also attended two craft shows.  Lyn had hinted that should anyone want to go out to lunch, she had two $5 bills and a couple of $1 bills and could pay for herself.  She's subtle like that.  They went out to lunch and she was very happy.

Friday, October 5, 2012

In Peak Shape

A couple in their 80's has climbed Mt. Kilimanjaro to raise funds for the Alzheimer's Society of British Columbia.  Their efforts have raised more than $24,000 as a result.  They were part of the Ascent for Alzheimer's team which raised more than $210,000.



What an amazing feat this couple and their team mates have accomplished!

Thursday, October 4, 2012

Picking Pumpkins

It is October already.  Fall is here and the leaves are starting turn.  The pumpkins in my yard are ready for being cut off the vine.  I've harvested two already and will harvest a third this weekend.  Lyn is not into gardening though she will help out from time to time.  She does, however, enjoy the occasional day trip out to a farm or an orchard.


Lyn has gone pumpkin picking more than once.  She doesn't go looking for the largest pumpkin or the one with a great side to hold a good jack-o-lantern face.  She likes the round ones that are not too heavy.  She also won't go very far into the field because she doesn't want to have to carry the pumpkin back very far.  Regardless, she enjoys herself and picks a nice pumpkin.

Wednesday, October 3, 2012

LABrainS

The Louisiana Aging Brains Study (LABrainS) is also known as the Pennington Study because it is being conducted by the Pennington BioMedical Research Center.  The study seeks to track the cognitive status of 2,000 Louisiana residents who are 60 years or older with no signs of cognitive decline or symptoms of dementia.  Participants are reviewed annually to see if any dementia symptoms or cognitive changes can be detected early.

The study is a long term study and results are starting to be announced.  It appears that Louisiana has a higher rate of dementia than other states.


Additional Information:
How's Paul: One year after first Pennington evaluation

Tuesday, October 2, 2012

Break in Routine

Breaks in routine are very hard on Lyn because she relies on consistent activities in order to know where she is in her day and what she can anticipate coming up.

Lyn's respite provider has had her car in the shop for the past several days and has been unable to take Lyn out as they normally are scheduled to do.  Mom has sought out daily activities more than normal as a result.  They have gone out to an early dinner, taking their lovely neighbor to one of my favorite restaurants.  They drove out to an orchard in the mountains to pick apples.  They even went out to breakfast at Tim's Place after getting their flu shots.


Despite providing a daily activity, Lyn has asked multiple times each day about her respite provider, the provider's car and when they would be back on schedule.  She's ended in tears on their way home from dinner with the neighbor.  Mom had to work very hard to keep Lyn from going into an anxious state on their way to the orchard because it was further out than the directions seemed to indicate.  The further they drove, the more worried Lyn became.

Lyn knows they should be back on schedule by Thursday and she's counting down the days.  So is Mom.