Tuesday, January 31, 2012

Crying

On Sunday, Lyn went to bed at 4:30 in the afternoon and slept until about 8:30 in the morning.  She had been in tears because her ears and throat hurt.  Mom called into the doctor first thing Monday morning and got her in to see the doctor.  Lyn has a cold; nothing more.  There was no ear infection, no strep, nothing else.  This is the second cold in a month for Lyn and she's having a hard time dealing with it as well as recovering it.

Over the past two weeks, Mom has noted a marked increase in Lyn crying.  It is not a daily occurrence.  However, it is a frequent event.  Lyn will burst into tears at the drop of a hat.  Sunday, she cried twice because she "didn't feel good."

Lyn now cries if someone corrects her behavior, if she's tired, if she doesn't fully understand something or if she doesn't feel well.  Overall, she's just more emotionally delicate than she was even a month ago.

Monday, January 30, 2012

Lining Up More Resources

Last week, Mom and Lyn visited another day hab facility.  This one has a much smaller clientele.  As a result, there is a higher staff to client ratio which allows the staff to tailor activities to the interests of the individual clients.

When they visited, their tour was led by a staff member who was accompanied by one of the clients.  Lyn liked the tour and the people she met.  She liked the list of in-house activities as well as the options for activities or events out in the community.  When Lyn stated "I like to be in the community," the staff assured her that they could accommodate that preference.

Upon leaving, Mom and Lyn talked about the day hab and decided it was a good fit for Lyn.  They have contacted Lyn's case manager who will handle the next steps to register Lyn as a client of the facility.  This one has a much shorter waiting period.  So, hopefully, Lyn will be able to add the day hab to her weekly activities soon.

Additionally, last week, Mom reached out to the Alzheimer's Association office in New Mexico.  She's asked for any information they can provide on early on-set dementia in the intellectually disabled who do not have Down's Syndrome.  The staff at the office are a bit stumped.  They have started sending Mom information about dementia in general.  However, they are encountering the same thing I did when I started this blog.  There is not much information on dementia in the intellectually disabled beyond the impact of dementia on those with Down's Syndrome.  Even if they are not able to come up with much, the contact with the association may prove beneficial in itself as they can provide general dementia information and potentially open other doors to Mom and Lyn.  

Maybe it is time to reach out to the group at the University mentioned by Lyn's case manager.

Sunday, January 29, 2012

Mt Vernon

In 2007, Lyn and Mom came to Virginia for a week in the summer and we looked for opportunities to play tourist.  One of the day trips we took that week was a visit to Mt. Vernon, the estate owned by George Washington.


The property is expansive and abuts the Potomac River.  The day was beautiful and, for July in Virginia, not overly muggy.  We toured the underground museum, wandered the gardens, ate lunch  and then visited the farm.  We toured the house and visited the docks.  The property is expansive, wonderfully maintained and a great place to spend the day.

Lyn checks out the shaded seating overlooking the Potomac
While the rest of us were impressed with the innovative approaches to farming that Washington demonstrated, Lyn just enjoyed being out and about.  For her, the day trip is pleasurable not for its history, but for the simple fact that she's doing something out of the house.


I remember it as an enjoyable day and I was happy to find the above picture of my sister.  It is just her looking at the Potomac.  It is a calm picture and one without attitude.  Many days have been like this.

Saturday, January 28, 2012

No Paparazzi

We have always joked about how we cannot go somewhere without Lyn running into someone she knows.  Either she recognizes them or they recognize her.  People have come up from a crowd and called her by name, asked about her current sport in Special Olympics and then gone on with their day.  If we asked her, she could usually tell us when and where she met the person even if she could not remember their name.  If this happened in front of the person, they would, more often than not, confirm that Lyn had it right.  This skill of hers always amazed us.  It was mind-boggling to know that she could meet a person, spend part of a day with them and then recall that encounter 10 or more years later.  This was even more surprising to us when we learned that the areas of her greatest brain damage are the areas primarily concerned with memory.  While she's no longer able to recall them, people still approach her to greet her by name.

Lyn is used to and completely comfortable with being the center of such attention.  As I've previously mentioned, she relishes being the center of attention in general.  She assumes it is her right and just how the world works.  I'm not saying she's selfish about it.  She's really not.  She's just confident that the worlds as she knows it is Lyn-centric.  She has her own level of celebrity.

Like one of Hollywood's top stars, my sister does not always like having her picture taken.  She prefers to dictate when, where and by whom her picture will be taken.  We occasionally have to snap quickly if we are going to get any picture of her during one of our visits.


So, hugs and requests for autographs from fans are welcome.  Paparazzi are not.

Friday, January 27, 2012

Bowling in 2012

Lyn's now bowling on Tuesdays and Thursdays instead of Thursdays and Saturdays.  As a result, I'll post bowling scores on Fridays. 



The bowling alley no longer offers the deal on Saturdays that it did.  The deal is available on Tuesdays, however.  This works out well because Lyn's not interested in attending the Tuesday night dinner club which has been a weekly part of her life for nearly 10 years.

The challenge with bowling on Thursdays is that Lyn is getting rude and agitated if she is assigned to a different lane than she is used to or if the bowlers who share her lane are more animated than she wants.  Her respite provider has had to intervene and remind Lyn to use her manners.  Lyn is requiring closer supervision during her bowling sessions.

Mom asked Lyn's respite provider if she is seeing more mental decline.  She said not really.  What she has noticed is a negative attitude, almost "poor me, the world is against me."  She did say there have been a few times when Lyn is hostile but feels like she can't say anything.  Mom asked Lyn's respite provider to speak up and suggest that if Lyn is not feeling well maybe she should return home.  This could cause Lyn to burst into tears which may also indicate that she should return home.  Mom has asked that Lyn's respite provider notify her of these behavior incidents so they can be logged and reported to Lyn's case managers and physician. 

Mom states, "I am not prepared for this to happen so quickly!  In reality, I'm as prepared as possible but just hate to see her decline so fast.  On the other hand, she probably is further along with this disease than we think.  I think I'll make an appt with Lyn's physician."

Thursday, January 26, 2012

Hygiene is Becoming an Issue

Back in November, Mom realized that she had to take over washing Lyn's hair.  Mom has been keeping Lyn's hair in good order.  However, she may soon have to intervene with other aspects of Lyn's personal care.

The other night, after Lyn's bath, Mom asked if she washed her face.  "NO, I didn't feel like it." was the response.  When asked what did she wash, Lyn stated that she washed under her arms and just soaked what was under the water in the tub.  She prefers baths to showers so this didn't cover much.

The next night, Lyn stated she washed everything.  However, it is something Mom's going to have to keep tabs on because poor hygiene is a common problem with dementia as individuals forget to take care of their basic bodily needs.  I'm not sure how Lyn will react when Mom starts having to be involved with bathing.  I'm not sure how Mom will react either.  I know she can do it.  I also know it is a significant change and an added stress.

Wednesday, January 25, 2012

Fishing

For a year and a half, we lived in Montana.  It is where Lyn and I finished up high school.  While we were there, our step-father introduced Lyn to fishing.  He always took her to a well stocked pond where she had a good chance at success.

He would bait the line for her and she would cast her line into the water.  She had the patience to just hold still and wait for the fish.  Once she felt the tell-tale pull of the fish on the line, she would slowly start reeling it in.  Once the fish broke the water, Lyn was done as far as she was concerned.


This picture was snapped just seconds before she turned and nearly tossed the pole to our step-father.  Lyn never wanted to reel in the fish all the way.  Really, she didn't have to either.  Our step-father had trained his dog to retrieve the fish.  About the time Lyn passed the rod to someone else, the dog would jump in and pick up the fish.  She had a very soft mouth and the fish was gently placed at your feet.

Lyn would not pick up the fish.  She did not clean them.  He did.  She most definitely did not eat them.  I did that.  She was done!  Lyn loved fishing as long as it was on her terms.  You bait the hook.  She holds the rod and reels it in.  You do all the rest of the work.  If you could live with those terms then she was happy to spend the afternoon fishing with you.

Tuesday, January 24, 2012

Education Opportunities

One of the wonderful things about living in the age that we do, is the availability of opportunities to educate ourselves on any given subject.  Numerous universities make lectures available to the public.  Here are some lectures about dementia from the just 2010 and 2011 for your viewing pleasure:

Dementia Case Presentations by Dr. Berneet Kaur of UC Davis, Department of Neurology
     This lecture is an hour long and very interesting.  Dr. Kaur compares three cases and walks you through the patient's symptoms and the clinical findings.

The Aging Brain: Frontiers of Neuroscience in Health and Disease by UC San Francisco neurologists Gil Rabinovici, Adam Boxer, and William W. Seeley
     This lecture is an hour and half discussion on Alzheimer's and Frontotemporal Dementia.

The Hebrew University of Jerusalem has also provided a series of course lectures from 2011 on the degenerating brain.  Here is the series:  
     The degenerating brain: From research to hope - First Lesson
     The degenerating brain: From research to hope - Second Lesson
     The degenerating brain: From research to hope - Third Lesson
     The degenerating brain: From research to hope - Fourth Lesson
     The degenerating brain: From research to hope - Fifth Lesson
     The degenerating brain: From research to hope - Sixth Lesson
     The degenerating brain: From research to hope - Seventh Lesson
     The degenerating brain: From research to hope - Eighth Lesson
     The degenerating brain: From research to hope - Ninth Lesson
     The degenerating brain: From research to hope - Tenth Lesson
     The degenerating brain: From research to hope - Eleventh Lesson

Stimulation of latent, neurogenic stem cells in the hippocampus:New therapies for dementia and depression by Prof. Perry Bartlett from The Queensland Brain Institute at The University of Queensland
     This lecture is an hour long and is provided by The Australian National University.  The Australian National University also has related lectures linked to this.

Ready to go back to school?

Monday, January 23, 2012

Medicating Dementia

A number of medicines have been approved for the treatment of dementia.  Unfortunately, none of the medications currently available can reverse or halt the disease.  At best, they may slow it nominally.  Best results occur if the medication is started when a patient has Mild Cognitive Impairment and has not yet progressed further into dementia.  The medicines used currently include AChE inhibitors and NMDA Blockers.

Dementia can co-exist with other issues such as depression.  As a result, the dementia patient may also be taking SSRIs to treat their depression.  Of the available medical treatments, the SSRIs have the fewest side effects for dementia patients.  Unfortunately, recent findings published in the British Journal of Clinical Pharmacology indicate that dementia patients on SSRIs have an increased risk of falling in addition to an increased risk of being injured from the fall than dementia patients not on SSRIs.

Antipsychotics may be prescribed (PDF) if the dementia patient starts exhibiting aggression to the point of not being able to be calmed down.  However, antipsychotics have not been approved for use in treatment of dementia related aggression or anxiety.  This does not mean they don't help.  They very well may.

Currently, Lyn is not medicated for her dementia.  She does not want to take anything and the neurologist did not offer medication as an option.  The neurological exams ruled depression out as a cause for her symptoms.  Thus, there is no need for her to take an SSRI.  While she has days where she is hostile and rude, she has not threatened anyone, destroyed anything and can still be calmed down.  This rules out treatment for her behavior at this time.

Sunday, January 22, 2012

Conversational Disconnect

For the past several weeks, I've noticed that my conversations with my sister have become more one sided if we are on the phone.  The conversation usually starts with her asking about my husband and children.  After we get through the questions, I'll tell her what is going on in my home or what my plans for the day are.   I'll ask her questions and try to get her engaged in the conversation.  Normally, her responses to me are "Yeah, Ok."  or "Uh huh."  She'll say response phrases like that even if I'm not taking.  Anymore when she asks me a question, I'm not even sure she is listening to my responses.  If she is, I seriously doubt that she's processing them.

I just hung up from speaking with her before sitting down to write this.  When she asked about my husband this time, I started to let her know that he was out with friends.  She interrupted "That's good.  Did he have a hard day?"  I started to answer and she just continued with her thought.  Her next thought was to ask about my eldest.  I started to reply and was cut off as she asked about my youngest who was already in bed.  I stopped talking and just listened.  Lyn didn't notice.  She was off talking about the 63 cents she won at the casino.  She plans to use the 63 cents to buy her plane ticket to see us.  She rambled for a few more minutes as I just listened.  Suddenly, she decided I needed to go and passed me off to Mom.

The first part of the conversation felt like Lyn was pushing hard to get her normal questions about my family out before she forgot.  After that, the thoughts were very disconnected and all over the place.  I asked Mom if Lyn was confused today and Mom just laughed  "Is that the first conversation where she's done that to you?"  It was.  Mom reports that conversations like that are happening more frequently.

I've not noticed this pattern when we Skype.  I think, and it is just my theory, that she's still able to engage more solidly because she can see and react to our facial expressions.  She can see my children pop in and out of the camera view to say hello or to show her something.  The visual aspect of those conversations definitely seem to spark more interest and responses from her.

As Mom and I were wrapping up our call, confirming our next Skype time, Lyn asked Mom to tuck her into bed.  Now it was Mom's turn to be caught off guard.  Lyn has not asked for a tuck in for years.

Saturday, January 21, 2012

Doing a 560

Mom decided that Nikka needed a bath today much to Lyn's amusement.  The dog was stinky and Mom hates dog stink despite loving dogs.

Working together, Mom and Lynn picked up Nikka and put her in Mom's tub.  She put her head on the side of the tub and didn't move a muscle.  Nikka has some of the saddest eyes I have ever seen and I'm sure she looked absolutely dejected.  Lyn stood back and laughed till tears ran down her cheeks.  The dog's eyes looked up as if to say she knew Lyn was making fun of her.  When Mom got the dog rinsed off she was afraid Nikka would jump out but she didn't move.

Mom dried Nikka as much as possible while she was still in the tub.  Lyn moved the bath rug over and they convinced her to jump out of the tub.  She landed on the rug but headed into the bedroom and shook.  Fortunately her hair is so short that the shaking didn't result in water going onto anything.  Mom toweled her off some more before Nikka started running around.

Lyn was having a ball laughing at Nikka's antics because as the dog runs, she twirls around.  When Lyn could talk again, she kept saying "She keeps doing a 560!"  Mom pretended to not hear what Lyn said and asked her to repeat it.  "She keeps doing a 560."  Mom says "Actually, as much as Nikka was twirlling it probably was 560."

So now the dog smells nice, like a strawberry and Lyn laughed until her sides hurt and tears streamed down her face.  Griz used to make her laugh that hard, too.



After three days of naked hostility from Lyn, it was a nice break for them all.

Friday, January 20, 2012

Visiting a Day Hab

Mom and Lyn had an appointment to visit the Very Special Arts day hab facility this week.  They arrived at the appointed time and received a tour of the facilities.  The day hab employee showed them all of the activities which included stations for arts and crafts, sewing and even singing.  As they toured, Lyn spotted people she knew from her various social activities and Special Olympics.  They even were surprised to see Lyn's speech therapist walk in to work with a client who was at the facility.

On the way home Lyn was quiet and just shrugged her shoulders when asked what she thought.  Mom commented that they have a lot going on.  Mom asked her if she was interested and she looked confused.  Mom asked if she thought she might like to do arts and crafts all day a couple times a week.  Lyn's response was "No.  Maybe for a little while, but not like what they were doing."  She then apologized.  Mom assured Lyn that it was up to her.  Lyn has time to consider what she wants to do as they will be visiting other places.  Additionally, at this location at least, there is a minimum waiting period of 6 months for an opening.

Thursday, January 19, 2012

Hostility

The number of days when Lyn shows open hostility are increasing.    The cause is the mental decline itself and the feelings of uncertainty and anxiety that it provokes.  Knowing this doesn't make the hostile days any easier for Mom to wade through.  A tough day is still a tough day.  Tuesday night, Mom wrote:

     We had a rough day today.  She was borderline hateful and snotty.  When I asked a question, she
     used a rather loud hateful tone to answer.  When I asked why she was using "that tone of voice," she,
     of course, denied it.  I reminded her that I didn't use such a tone.  Therefore, she couldn't use one
     either.  That would bring on The Look.  By mid-morning I knew I had to do something to completely
     change whatever was going on.  So I suggested we go find the two day hab facilities we'll be looking
     at.  I wanted to know where they are located.  We will tour one in the morning.  She heard "go" and
     that made everything better.  Nikka heard "go" and she ran to the garage door, hoping to be included
     and not sent to her crate.  LOL

     Lyn kept saying "I know where VSA is" and was going to direct me.  She seemed insulted that I'd
     written down both addresses.  Fortunately, both are out on North 4th Street.  So, off we went with the
     dog in tow.
     I had a very good idea where they both were but am able to play dumb.  When I got off I-40, she
     started with a bossy tone.  I reminded her that I could get right back on the highway and go home if
     she couldn't be half-way sweet.  One of the places is a 1/2 block from I-40.  I pointed it out and she
     argued that this wasn't the place.  I agreed it wasn't VSA (Very Special Arts) but the one I'd mailed
     the referral form to on Saturday.  "Oh" was all I heard.  

     We then drove in total silence about another 10 min.  I knew VSA was close to Griegos Road.  She
     said "No, it's on 4th Street, on this side."  Yes, it was on her side and about 1/2 block North of
     Griegos.  I kept quiet.  As we approached, she got excited and began pointing it out.  I said "that is
     where I thought it was" and now I know for sure.
  
     She looked like I'd kicked her when I didn't pull into the parking lot.  Kept on going to head home.
     I tried to explain that we can't just go there without an appointment which we have for Wednesday. 
     She was sullen for a couple of hours.  I just ignored her the rest of the way home.  I had neither the
     energy nor inclination to try to explain anything.  

     Once home, I asked if she felt ok because if she was being hateful because of cramps or being tired,
     I'd be happy to call her respite provider and tell her not to come for tonight's dinner group outting.
     Let's just say that they did go out.

     When her respite provider called from the gate, Lyn put on her jacket.  From her actions, I could tell
     she wasn't happy.  She jerked the zipper up and it came apart.  I told her to slip it off and go get
     another one.  I could fix the zipper while she was gone.  She had confusion in her eyes so I stood up
     to help her slip the jacket over her head.  

     She went out the door mumbling.  They came home early saying there was nothing to do.  When she
     went back to her room she saw the jacket, came out and nicely thanked me for fixing it.  She took a
     bath and was asleep before 8:30.
  
     I was worn out!  Dear God, I hope I can do this..............

Wednesday, January 18, 2012

Memory

Dementia robs our loved ones of their memories because the brain is experiencing cell death at a faster rate than new cells are produced.  This lead me to wonder how memories are formed.

New brain cells are created each day.  Those cells are integrated into existing neural pathways and are active for several weeks during which time, they behave like a time stamp, recording events or associations which happen during the new cells time of peak activity.  You experience a stimulus through any of your senses.  Your brain processes that stimulus and decides to encode it or not.  Encoding is the process by which the brain converts that stimulus into the construct which is stored in the neural pathway.  During encoding, a synapse is strengthened when a new connection with another synapse is created.

In 2008, scientists were able to record individual brain cells recalling memory.  The study showed that memories occur when the same neurons which were active at the creation of the memory are stimulated. If the neural pathways are damaged when the individual cells within die and are not replaced, then the memories cannot be recalled.  By the time it is noticeable, the individual may have already lost 50% of the cells needed for memory recall. 

Tuesday, January 17, 2012

Gratitude

Saturday, Lyn had a very good birthday and we are grateful to the community of people who made that happen.  It was a series of little things that made her day.  It was our uncle who came over and ate cake with her.  It was the folks at church who invited Lyn to carry the cross during the processionals.  It was the church choir who sang Happy Birthday and the priest who called her up for a special blessing at the end of Mass.  It was the waiter at one of her favorite restaurants who brought her an ice cream sunday with a lit candle.  While Lyn was disappointed that her respite provider was unavailable for the day due to a death in the family, she allowed herself to enjoy the attention paid to her.

As I contemplated what to write for today's post, I came across a post for NPR's 13.7 science blog by Barbara J. King called "Joining the Dementia Network, and Finding Gratitude."  What she writes is strikingly familiar despite the differences between her mother and my sister.  The piece is worth the read.  For me, the best part is the final paragraph which just rings true to me.

"And, my mother is with us. She's a person who matters for who she is now. She thinks about the world and the events and people in it; she gives love and feels love. I'm thankful for my mother."

I know this feeling.  Even before my sister was diagnosed with dementia, I felt it.  "She's a person who matters for who she is now."

Monday, January 16, 2012

Chocolate Cake

When Lyn was learning to feed herself, she would hold her spoon or fork in her right hand.  She knew she was supposed to hold the utensil.  The utensil just wasn't of much use to her.  So, she held it while she used her left hand to scoop up a heaping handful to shove into her mouth.  This is a very messy method by which to feed yourself, but it worked.


Notice that the right hand is nearly spotless while the left is a mess.

The picture above was from our brother's birthday.  Chocolate cake was obviously a big hit as it was a few months later (below).


At the time of these pictures, our father was stationed with the Army in Alabama and guys from the base knew that Mom kept an open door and an extra plate at the table.  Most evenings, there was an extra guy or two from base over for dinner.

Lyn loves spaghetti.  She did then too.  Feeding herself spaghetti was an adventure which frequently grossed out most of the adults who witnessed it.  She'd hold the utensil in one hand and shovel with the left.  Spaghetti sauce would over her pretty evenly.  Noodles would be mixed in with her hair and hanging out of her nose.  It was a mess!  But she did it herself.


1/20/2012 Update:  I cannot tell my right from my left sometimes.  Mom kindly pointed out that Lyn's LEFT hand is spotless and her right hand is covered in cake in both photos.  Lyn is left-handed.  However, at this time, she fed herself with her right hand because she was holding the utensil in her left hand.

Sunday, January 15, 2012

It is Not Fair

I was chatting with a friend from work who has started reading this blog.  She knew I had a sister who was intellectually disabled.  She didn't know about the dementia diagnosis or the blog until recently.  She's been reading the blog from the first entry to today's and getting caught up to date.  I am thrilled to learn that she's been moved by my posts and greatly appreciate the feedback.

As we spoke, she declared "It is not fair (that Lyn has dementia)!"  I agree it is not.  However, what in life is supposed to be fair?  Some may counter such a declaration with assurances that God would never give us more than we could handle.  I, personally, am not so quick to make such attributions

In all honesty, I could argue that it is not fair that Lyn is intellectually disabled.  I have made that very argument on several occasions, starting as a child when I realized the differences between our skills and preferences.  I could argue that it is not fair that she has blue eyes and I have brown; that she is good at sports and I am the last person you want on your relay team.  But, railing against reality doesn't change it and it does nothing to improve anyone's life.

This is where my belief that we underestimate ourselves comes into play.  Does God give us only what we can handle?  I don't know.  What I do know, however, is that I will never know my limits until I put in the effort and push myself.  I can sabotage myself by saying "I can't deal with this" or "It is beyond me."  What good does that do? 

Mom never told Lyn she didn't have the ability to do something.  We didn't know if Lyn could do something until we let her learn and apply herself.  Some of the things that Lyn has achieved in her lifetime include:
  • graduating from high school
  • self-care such as doing her own laundry
  • riding the city bus to get from home to work 5 days a week by herself
  • working at Wendy's for 19 years
  • dating (chaperoned, of course)
  • learning over 100 sight words
  • competing in Special Olympics for 35 years at all levels, including World, in Track and Field events, bowling, skiing and gymnastics
  • bringing home hundreds of Special Olympics ribbons and medals


Based on just her IQ, some of these things should not have been possible.  Since the dementia, some of those skills have been lost.  They would never have happened if we allowed ourselves or allowed Lyn to underestimate her abilities.  Maybe learning to do your own laundry or learning how to navigate the bus system seem like small tasks to us, but they were challenges for Lyn that she conquered.  That was the model under which I grew up.

As a mom and a foster mom, I see this again in the children in my life.  They have their issues, as do we all.  I have seen a child who was kept in a car seat for 8 months, who couldn't even sit up on her own, learn to roll over, to sit up and to stand with assistance and support her own weight in two weeks when given the chance to push herself.  I have seen a child with PTSD learn to trust and to love.  No, life is not fair; but we always have a choice.  We can choose to accept the challenge in front of us or not.  Lyn's accepted many such challenges so I will to.

As Mom pointed out on numerous occasions when our teenage drama would cause us to spout "It is not fair!" over some perceived slight from the universe in general or from her specifically: "Show me where on your birth certificate that it says life is going to be fair."  It doesn't.  My birth certificate definitely has no such guarantee.  I suspect that Lyn's doesn't either.  Hers is in Italian which I don't read.  However, I am pretty sure a translation of her birth certificate would not reveal that life is supposed to treat her fairly either.

Saturday, January 14, 2012

Happy Birthday Lyn


Happy Birthday, dear sister.  May today be a good day.

We have no idea why she was out of sorts when the picture was taken.  She was and I love the resulting snapshot.

Friday, January 13, 2012

Lyns Birthday Wish

For her birthday, Lyn wanted Mom to buy her a new pair bowling shoes.  Here's what she got.

I had to laugh when they showed the shoes to me.  They described them as "white with some black splatters on the heel."  I took one look and complimented Lyn for her skulls.  I didn't know that bowling shoes had skulls.  They were a bit surprised because neither had noticed.

Lyn likes them.  She's already used them for the two bowling shoes this week.  She says they helped her have a good afternoon bowling.



Lyn takes good care of her bowling shoes and these will last a long time.

Thursday, January 12, 2012

An Interesting Study

In 2008, a study was released showing that nicotine may slow dementia in its early stages.  The study was done on rats and tested if a task could be completed successfully with or without nicotine as well as with or without distractions.

Jumping forward to this week, a new article appeared on the BBC indicating that this line of study has continued.  The new study has investigated the use of nicotine patches as a cognitive boost for patients with mild cognitive impairment (MCI), also known as "pre-dementia."  The new study is small, only involving 67 people.  However, preliminary findings indicate a gain back to normal performance for age on long-term memory.  The findings were not statistically significant which means that the results don't rule out chance results and studies need to continue for a longer time and with more study subjects.

The interesting thing in all this is that the nicotine slots into certain receptors in the brain which are lost in Alzheimer's patients.  I wonder if the introduction of nicotine, particularly in non-smokers, is stimulating activity in the brain and this activity itself is leading to the slight slowing of dementia.  Is nicotine like exercise for the brain cells?

Now, given that there is a potential therapeutic benefit to the use of nicotine, I'd be remiss if I didn't also point out that nicotine is addictive and toxic.  So, don't start smoking in the hopes of getting a bit of a cognitive boost.  The additional health risks really aren't worth it.

Wednesday, January 11, 2012

Miss Subtlety

When we were growing up, our Sunday afternoons were normally spent at our grandparents' house.  Grandpa occupied the front porch and Grandma could either be found in the kitchen or her room.  It was Lyn's habit shortly after our arrival to head out to the back porch to scope things out.  The back porch was an addition off the kitchen.  It was enclosed and not really a porch in the way you might think of it.  The back porch is where my grandparents stored their kitchen linens, their canned goods and some of their pantry items.  Most importantly for Lyn, the back porch is where the cookies were kept.

Grandma kept two types of cookies in the house.  They were either the large, soft oatmeal ones from the grocery store or they were cookies she made, usually chocolate chip.  The oatmeal ones were Grandpa's favorites.  Lyn would locate the cookies, get Grandma's attention and state "Grandma, those are my favorite cookies."  Lyn never asked if she could have a cookie.  She just pointed out that whatever cookie was available was her favorite.  Grandma would, of course, understand what Lyn was saying and  direct Lyn to get permission from Mom before getting a cookie.  There was an exchange of looks between Lyn and Mom and then Mom would chuckle at Lyn's subtlety while granting permission.  This technique didn't always work, but it did often enough to make it worth Lyn's time to try.

All of this is to say that my sister remains Miss Subtlety.  I called Mom last night to see how their day in the Bosque went.  It went well.  They saw two Bald Eagles and that was the most exciting part of the day for Lyn. While I was talking to Mom, Lyn kindly whispered to Mom "She's tired.  You should let her go."  It was a gloriously subtle attempt to get Mom off the phone.

Tuesday, January 10, 2012

Bosque

Today, Lyn and Mom are going to see the Bosque del Apache National Wildlife Refuge with a family friend.  Normally, they go on the weekend but Mom realized there was no reason to wait since they all have time available.

They will take the binoculars and check out what birds have come in to spend the winter in this wetland.  


They will see Bald Eagles, Sandhill Cranes, Snow Geese and lots of different kinds of ducks by the thousands.  They will walk the loop path which will only take them about an hour.  Along the path, they might encounter some Greater Earless Lizards or the New Mexico  and Checkered Whiptail which live in the Bosque as well.   The Whiptail lizards are interesting because most of the species that live in New Mexico reproduce parthenogenetically.  This means that the female lays unfertilized eggs which hatch into clones of the mother.

When they're done there, they'll head into San Antonio, the little town in New Mexico; not the city in Texas, for lunch at Manny's Buckhorn Tavern.  The Buckhorn serves some of the best green chile cheeseburgers around and was featured on an episode of Throwdown with Bobby Flay.

They've done this trip many times before.  They go a couple times of year.  Lyn's looking forward to the day.  She knows where they're going and that they'll be home early enough in the afternoon for her to spend the evening with her respite provider.

Monday, January 9, 2012

Losing Skills

Observation 1:
Lyn needed to run hot water into something.  After letting the water run for about 3 minutes, she said "Something's wrong.  The water isn't hot."  Mom went to see.  On the way to the kitchen sink, she realized she had heard this before.  Lyn had the faucet handle turned as far to the the right as possible.  She had it on cold.  Mom asked her which way was hot and she gave The Look while stating that she knew what she was doing.  Mom just reached over, turned it to the left.  Viola-in just a moment it began to get warm.  Mom got The Look again before she walked away.

Observation 2:
Last year, when the neurologist heard that Lyn didn't know how to run the washing machine any more, he suggested that she just needed to be retaught.  Since then, Mom has been trying to reteach Lyn how to it.  She would show Lyn how to measure the soap.  Lyn would then be given a chance to try.  Next would come the step of setting the machine to the starting position.  Mom would put her finger next to the position and ask Lyn to turn the nob until the arrow pointed at it.  Lyn would start turning the knob.  After she made three complete rotations or so, she would look to Mom like "What now?"  Mom would stop her and put the knob into position.  If she asked Lyn to start the machine, Lyn didn't know what to do.  They have been trying to relearn this skill for several months with several repeated attempts each week.  It is not getting any better.  So, Mom has decided to call a stop to the lessons.  There is no retention and this skill really is lost despite what the neurologist suggested.

Sunday, January 8, 2012

My Bridesmaid

In the early 1990's I got married and Lyn was one of my two bridesmaids.  The wedding occurred in the middle of a blizzard that lasted for about a week.  It was so cold and the weather was so bad that a number of our guests couldn't make it  and were stuck about 60 miles  away.  Lyn was a big help in the days leading up to the wedding as we worked to finalize everything from the food to the church and reception decorations.

On the day of the wedding, the snow stopped about a half hour before the ceremony.  Everything was covered in snow and ice.  The sidewalks were icy and walking was treacherous.  Even so, the church managed to be packed.

Lyn took her role as bridesmaid very seriously.  During the rehearsal, she paid close attention and worked to follow the lead of my Maid of Honor.  That role was filled by my best friend.  They had known each other for years and were very comfortable with each other.  Lyn knew she could follow along and my girlfriend knew how to work with Lyn.  It was a good pairing.

After the ceremony, Lyn asked to change out of her dress shoes to more safely navigate her way to the reception hall.  No one objected.  It was a practical and reasonable request.  When we got to the recption. Lyn  decided she was more comfortable in her high top sneakers than in the dress shoes.  They stayed on the rest of the night.

I loved it!



I insisted on taking this picture and only convinced her to cooperate because it was my wedding day and Mom had told her she had to be nice.  She wouldn't have allowed me to otherwise.  You can tell she's not happy in this picture.  She's got the smile that is not quite a smile, the one that doesn't touch her eyes on.

In the end, she was the smartest one of the night.  The snow resumed in full force before the reception ended.  Lyn probably had the surest footing of anyone there.

Saturday, January 7, 2012

She Wants to Remember

Lyn wants to remember what is happening in her life.  Mom writes:

She said she wanted to find her purple notebook and wanted me to write something like I did before.  She has had me write 3 times, 3 different days, about what she did that day.  She found her notebook and asked if I could write something.  I printed a couple of sentences of going to the dentist and pro-shops looking for bowling shoes.  Also noted her scores.  Her bowling scores for this week were 92 and 126.  She got a Turkey in the 10th frame which is how that 126 came about.  She's proud of herself.



Handed it back and she said "This really helps me remember."  She would make an outsider think she can read.  She said she thinks we should do it each day.  I said that would be ok but I know she won't ask again for some time.  Yes, I know it makes no sense but what would you do?

To which I respond:  Just what you did.  I'd honor her request and write something in her notebook.  It doesn't matter that she can't read it.  What matters is that she asked for help and you responded.

Friday, January 6, 2012

Living Desert

Last month when Lyn and Mom went to Carlsbad for the Christmas lights, they stopped at the Living Desert Zoo and Gardens State Park.  At the entrance to the zoo, there is a small sculpture garden with pieces made by a local artist.



Lyn liked it and wanted Mom to take a picture.   Some days are not about Lyn's dementia and the changes that are going on.  Some days need to be about enjoying the good moments that still happen even, maybe especially, when it is just the two of them.  This was one of those days.

I love that New Mexico sky.

Thursday, January 5, 2012

Seeing This More

I've noticed over the past couple of months that I'm seeing certain behaviors more and more during our Skype sessions each weekend.  Some amuse me and others leave me with my head cocked like the RCA dog listening to his master's voice.

In the TMI category, the behavior that kind of amuses me is that Lyn now spends significant time during our calls with her finger up her nose.  She's become completely uninhibited with this behavior during our conversations.  Mom can see it happening behind her because she's got Skype set to show a window of what her webcam is projecting.  Mom has tried reminding Lyn to get a tissue or to stop.  Lyn will shoot her The Look and a few seconds later be doing the behavior again.  So, Mom and I mostly pretend there's no show in the background and continue with our conversations.  It is just not worth the agita it would cause either of them to make an issue of it.

The other behavior, the one that leaves me puzzled is a facial expression Lyn is using more and more.  It is this one:


This is Lyn's smile for when she really doesn't want to smile.  It is her "I'm smiling because it is expected; not because I want to" smile.  I'm not sure why she's doing this so much at the moment.  Without asking her directly, I suspect that she interprets the situation as one which would warrant a smile because Mom and I are smiling, for example, but she's not sure what is the motivation for the smile.  Does that make any sense?  I'm thinking of times when people laugh because others are laughing; not because they get the joke.  I see this response with my youngest who will laugh to participate and hope to figure it out later.

I'll try to remember to ask Lyn what she's thinking when next we Skype and I see her put this expression on.  I wonder if she'll be able to articulate what's going on in her thoughts or if I'll get a non-sequiter.  Non-sequiters are interesting too, don't get me wrong.

Wednesday, January 4, 2012

2011 Bowling Wrap Up

On Thursday, Lyn went bowling for the first time in several weeks.  Bowling was partly on hiatus through December due to the holidays.  Lyn didn't do too badly considering she'd had a break.


Bowling starts back up again this week with regularity.  For her birthday next week, Lyn has asked Mom to get her a new pair of bowling shoes.  I think they'll be picking out a pair at the pro shop this week so Lyn can start using them right away.

With the start of the new year, we'll start a new chart to see how her scores fall out over the next several months.

Tuesday, January 3, 2012

Lyn and Nikka

Nikka has settled into the home with Mom and Lyn.


Nikka would be a lap dog if Mom would let her.

She's learned that she's not allowed to bark at the neighbor's dog just because the neighbor's dog barks at her.  She does bark when people walk by their property or comes up their walk.  Once guests come in the house and get sniffed, the dog settles down.  The second time a guest arrives, Nikka doesn't even bother to bark, she just greets the with a wag and a wiggle.

Nikka's learned that she's not allowed in the dining room during a meal.  She stays in the living room and waits until the table is cleared before she approaches the table.

Nikka has taught Mom that she, the dog, has a bed time.  When it is time for her to sleep for the night, Nikka gets up and heads into her crate.  The crate is kept in Mom's room and if Mom doesn't come to bed right away, Nikka comes back out, looks at Mom and goes right back into her crate.  If Lyn sleeps later than Nikka thinks she should, Nikka will pace back and forth between Mom and Lyn's bedroom door.

Two sets of cousins have come to visit since Nikka came into the home.  Nikka decided that all of them were good people and spent much of each visit playing with the children.

Having Nikka there has perked Lyn back up a bit.  They love playing with each other.  Nikka doesn't talk with Lyn the way Griz did, but she has her own way of engaging with Lyn.  She's a good dog.

Monday, January 2, 2012

Two Toes

This weekend, I was reminded of an incident from our childhood.  Lyn and I had been alone for the afternoon.  We had one argument after another.  We couldn't really go into our own rooms to cool off because we shared a bedroom.  Apparently, neither of us felt we could go into other parts of the house or leave each other alone.

At one point, Lyn got so mad that she came at me physically.  I was sitting on the floor with my back up against the wall.  Her hands were out and she intended to hurt me.  So, I braced, brought my feet up, caught her in the stomach and pushed.  She fell backwards and landed against our dresser.  That only made her madder.  The second time she came at me, she realized I hadn't moved and could kick her back again.  She decided to kick me.  She kicked me for all she was worth.  All her rage was in that kick.  Her bare foot made solid impact with my shin.  It hurt me but she went down.

I knew Lyn was hurt and called Mom to fess up to our fight.  Mom had me get Lyn to the couch and put ice on her foot saying that she would look at Lyn's foot when she got home.  Mom was MAD.  We had promised to get along and clearly we didn't heed our promises.

When Mom got home, she realized that Lyn's foot was in worse shape than expected and off we went to the ER.  Lyn had broken two toes.  They were swollen and purple.  There wasn't much the doctor could do other than tape the toes together, tell her to rest and to not kick her sister.

Lyn had the worst of the argument.  Her toes were broken and she had to let them heal, foot up for days on end.  I didn't get off light either.  I ended up having to tend to her while she recuperated.  We had many more arguments after that one over the years.  That was the last that got physical as far as I remember.

I asked Lyn if she remembered that incident.  She still remembers.  When I asked, she threw up her hands and said "I learned!  I learned!"

Sunday, January 1, 2012

A Short Interview

It is the start of a new year and I thought I'd ask Mom a few questions about what 2011 brought to her and Lyn.  We decided to approach it as an interview.  Mom's got a lot on her plate so we did this via email.  That way, she could think about her answers and respond when it was most convenient to her.  Here is the exchange:

1.  It has been six months since Lyn was diagnosed with dementia.  After the initial shock of the diagnosis, how has it changed your daily life as Lyn's care giver?

I am still dealing with the shock.  I am now hyper-vigilant with her.  I try to wait till I see a change happen 3 times before I consider it part of the new norm.  I work very hard to be patient with her and hope she's not manipulating me.


2. Since the diagnosis, you've been through a series of physical as well as psychological tests with her.  Was there anything from all the diagnostics which provided you more insight into what is going on with Lyn?  What were the good things about the diagnostic process?  What were the frustrations with the process? 

I think the diagnostics were pretty much a waste of time.  The Ph.D (clinician) will not acknowledge dementia as a diagnosis but she agrees Lyn's not depressed.  I don't believe there were any good things in the process since no one other than the Physician's Assistant no one really listened to me.  The frustrations?  No one really listened to me other than the PA.  Because Lyn's never fit into an easy category, they don't know what to do with her.

3.  I remember the neurologist saying that he didn't believe in dementia at Lyn's age.  Why do you feel the neurologist and the clinician were hesitant to attribute the changes observed with Lyn to dementia?  Why, given the other cases of early on-set dementia, were they ruling it out?

I think the neurologist has never dealt with a special needs client.  Maybe he didn't like me being informed and suggesting anything to him.  I have dealt with that before.

The Ph.D said that most of her clients with dementia are first seen when they no longer verbally engage and since Lyn still does engage she was "reluctant" to label her at this time.  No, she didn't think she would improve so I "should just watch her."

4.  How has Lyn's diagnosis changed your interactions with her?

I am more patient.  I still try to have her do things she's always done but if I see she's having a problem or becoming frustrated I try to distract her or ask if she needs help.  I am very aware of her facial expressions and her eyes.

5. Looking forward to 2012, what are your hopes for Lyn?  For yourself?

I hope she continues doing as she's doing, maintains her social life.  I don't want this to progress too fast.  For me?  Doing what I've done for 40 yrs.

6.  Can we look into the long-term future for Lyn?  What do you anticipate in a year?  In two years?

We can look into long-term but we don't know how fast this will progress.  I learned a long time ago not to anticipate ahead a year or two.  Perhaps a month at a time.

7.  Do you have an action plan for Lyn's future needs?  What steps on those plan need to be put into place in 2012?

Sorry, I don't have a plan at this time.  I know eventually she will need constant care, someone awake for example.  I will need to put alarms on the inside of my door and possibly windows.  If we begin to see drastic changes her case manager will be able to get more care givers in place.  Perhaps she will have to go into a facility for more specialized care.

Thank you for the time and the responses you've given.  I appreciate them.