Thursday, May 29, 2014

Smell is Taste

The sense of smell is the ability to discern chemicals in the air.  Taste is the ability to discern chemicals in our food.  Our food sheds some of these chemicals into the air which is why we're able to smell it.  While taste and smell are different senses which use different organs to doing the work, they are tightly coupled.  Think of how you re unable to properly taste even your favorite foods if you're fighting a head cold.  The inability to smell dramatically impacts the ability to taste.

One of the change that is commonly noted with Alzheimer's patients is a decreased ability to smell.  We've read about the peanut butter test which uses peanut butter held mere inches from a person's nose to determine if they should be evaluated for Alzheimer's.  We've read about Alzheimer's patients no longer being able to smell lavender, leather or citrus scents.  In Alzheimer's the brain is being actively damaged and a lost of smell is a symptom of this.  

We also have read of Lyn's changing tastes and an apparent forgetting of her food preferences.  This is also a common symptom of Alzheimer's.  The sense of taste is also dramatically impacted by the damage done to the brain.  However, the two senses are so interdependent that we shouldn't consider their decline independently of each other.

We don't know how much of the loss of taste or the change in food preferences is a result of the direct damage to the neurons involved in that sense or how much is a result of the damage done to the sense of smell.  I suppose it doesn't really matter.  However, for me at least, it points to the fact that the change in food preferences is a result of the damage done to the sense of taste.  It is not a mystery after all.

Wednesday, May 28, 2014


Some days are tough.

There is no getting around it.  Some days are just tough to get through without loosing your cool when you're caring for someone who lives in a reality that is different than your own.  Heck, your someone can be in the same reality and still cause a tough day.

Care providers come in all shapes and sizes, ages and abilities.  Care providers may be a young person caring for a grandparent who has dementia, a spouse caring for a loved one fighting cancer, or a parent caring for a child with special needs.  The variations on the theme are, unfortunately, endless.      We may never know that the stressed out person we just encountered hurrying from place to place was a care provider rushing to take care of some business before returning to care for someone in need.  The parent who is waspish with the child in the restaurant may be contending with more than it first appears.

It is easy to overlook the subtle clues that may indicate more is going on that first meets the eye.  The stressed out care provider may be trying to keep the extent of their frustration out of public view and thinks poorly of themselves when they slip and let the irritation be known.

Perhaps I am projecting on that last one.  Then again, some days are tough.

My youngest has anxiety based issues as a result of surviving abuse prior to joining our family.  This can lead to lots of attempts to control when anxiety is high because if the child feels in control, the child feels safer.  These behaviors are primarily directed to me.  I can be told what to cook, when to cook, where to go and what to do.  I can be corrected for anything my child disagrees with and it can be quite pedantic.  I know where these behaviors are coming from but that doesn't make days like this any easier.

The same is true of caring for someone with dementia.  Mom has spent the last few days being corrected about everything and anything.  Lyn's acting as though she's convinced that Mom's a complete idiot.  The corrections are terse and borderline hostile.  Lyn also is trying to control anything that can happen in a day.  She tries to control what Nikka is doing as well as what Mom is doing.  Lyn's behavior also results from anxiety.  Like my little one, if she feels in control, she feels safer.

That's one of the interesting things that Mom and I have witnessed many times over the last three years.  Our children exhibit many of the same behaviors despite their anxiety coming from different causes.  So, on tough days like today, I try to remind myself that my little one has a long way to go and has great potential to become an independent adult.  I try to remind myself that my little one exists in mostly the same reality as me.  I try to remind myself that I have it much easier than Mom does in this regard.

Then I call her and check on her and try to show a bit more empathy for what she's going through because in some ways I actually do understand.

Tuesday, May 27, 2014

Mice as Models

As I was reading for this article, I couldn't help but recall the title of Steinbeck's novel Of Mice and Men.  While it would have been a nice title for this post, the connection is no deeper than those four words.  

In medical research, mice are frequently used as genetic models.  The mouse has been identified as a model, a stand in for humans, if you will, because it is a mammal with "close genetic and physiological similarities to humans."  The mouse is easy to handle, easy to manipulate on a genetic level, cheap to maintain and multiplies rapidly.  They have a short life-cycle and can express the desired traits or symptoms only months into their lives as opposed to the decades it takes to see the same symptoms in humans.  All of these factors have contributed to its widespread use in research.  While mice do not naturally get Alzheimer's, their genes can be manipulated to cause them to experience some of the hall markers of Alzheimer's such as cognitive decline or plaque tangles in their brains.

A mouse model does not refer to a single mouse.  It refers to a line of modified mice which share the same genetic changes.  There are thousands of mice models which have been developed and maintained for use in the research of such topics as cancer and Alzheimer's.  There are so many, in fact, that scientists have to carefully consider which mouse model is best suited for their research based upon the traits found in the available lines.  Some mice may show an early cognitive decline; some not.  Some may have plaque tangles; others may not.  As a result, no one mouse model can serve for all of the research needs.  

This complicates the research because what works on one mouse model may not work on another.  However, this is also beneficial because it allows the scientists to eliminate variables and narrow the focus of their research.  Even two of the newest mouse models are incomplete views into Alzheimer's.

So, why does this matter?  It matters because we see headlines heralding the latest study which shows promise in mice.  But, it is not in all mice.  It is not in just any old mouse.  It is in mice which have a particular set of genetic changes which allows them to express some of the hall markers of Alzheimer's.  It is hopeful and exciting.  However, it is still a long way from the solution working in humans.  We've seen before that the possible new solution doesn't make it beyond the one model used to benefit humans with actual Alzheimer's.

I'm in no way against using mice as models.  I understand the reasons behind their use.  I just want us to realize that the headlines which crow "Cures X in Mice" should be read with a critical eye.  We cannot declare a soccer game won by just the first goal regardless of what my youngest thinks and we cannot declare a cure from just one mouse model. 

Friday, May 23, 2014

Of Sails and Winds

The realization that Lyn is now encountering people she once knew in the community without recognizing them was one of those moments when you feel yourself struggle to take a deep breath.  It is not like we didn't know this day would come.  We've known that it was coming and have been recording her changes all along the way.

Lyn was diagnosed with Early On-set Alzheimer's in June 2011.  We are just a month away from her third anniversary of her diagnosis.  In some ways, this milestone of forgetting people seems to have come on quickly.  In reality though, it has been years in the making and Early On-set Alzheimer's is FAST compared to the form which sets in later in life.

I didn't have that feeling of dread or the struggle to breathe when Mom first told me about the incident at the shop.  It wasn't until I decided to check to see where this marker put Lyn in the progression of the disease.  It is hard to put a person cleanly in one stage or another as the symptoms between stages can overlap.  I believe it is a bit harder with someone who started off intellectually impaired because some of the differentiators are skills she never had.  For example, she's never been able to count backwards from 40 by 4s.

I'm not an expert and don't even play one on tv.  However, if my reading of the stages and if my understanding of where my sister is at is accurate, then she has transitioned out of Stage 5 - "Moderately Severe Cognitive Decline" and into Stage 6 - "Severe Cognitive Decline."  Both of these fall into the Mid-Stage Alzheimer's category.

  • She does forget recent experiences, often in the same day now, unless they were particularly strong emotionally.  
  • She still knows her name but much of her personal history is lost to her.  
  • She still knows faces she sees regularly and knows the names of those she sees frequently.  
  • Mom has to supervise her clothing selection each day.  Lyn still makes the selection but Mom has to direct her to the clothes that are best suited to the event or the weather.
  • Her sleep duration has increased quite a bit in the past month or so.  She's often ready for bed by 5pm and will sleep until 8am.  She will even nap during the day as well if the opportunity presents itself.
  • She's needed verbal supervision of personal hygiene issues for over a year, particularly during menstruation.  
  • Pacing has become a regular event.  Suspicion is a daily companion.  Paranoia comes into play when people she sees infrequently visit.  This includes her case managers.  She is also very worried if she's home and cannot see Nikka immediately.
  • She does not yet wander and remains attentive to sticking with Mom or her respite provider.
Will the rate of her disease progression increase?  We have no way of knowing.  We don't even know how she'll be in six months or a year.  That's why, when I realized where we seem to be with her disease, I felt deflated and struggled to breathe for a minute.  It was heavy realization even though we knew it was coming.

I cannot change this.  I cannot slow down her changes and I'm not sure I would.  It is also not about me.  This whole experience is about trying to make her comfortable and happy.  It is about recognizing the source of her fear and working to help her feel secure and valued.  So, when I realize that I've forgotten how to breathe, I keep telling myself that we've made it this far and we just need to get through this week or today or this minute.  We're not in crisis.  We're just dealing with the same thing that millions of others before us have dealt with and we, too, will see the other side of this.

And then I inhale again.

Thursday, May 22, 2014

Changing Attitude

For at least a year now, Lyn's been adamant that she does NOT have dementia.  She would get mad if we said Alzheimer's and intimated it had anything to do with her.  She would have none of it and insisted "I am just me!"  Imagine Mom's surprise on Sunday when Lyn took a completely different approach.

They had gone to Mass at the church they had previously attended.  They occasionally go to Mass there when there's an event they don't want to attend such as the baptism of a large number of children.  Such an event extends the service and makes it hard on Lyn.

The church's priest is new to Albuquerque and Lyn wanted to greet him on their way out the door.  She struggled with her words and he looked at Mom for an explanation.  "She has early on-set Alzheimer's." His jaw dropped.  When he collected himself, he asked how long she's had it.  Before Mom could reply, Lyn became very animated and a big smile bloomed on her face.

"I don't mind if someone asks about this diagnosis, but some people don't ask.  So, you can."  Lyn stopped and waited for the conversation to continue.  Mom explained that she was diagnosed 3 years ago but has probably been symptomatic for 12 to 15 years prior.  He offered the usual "I'm so sorry."

Mom urged him to not feel that way.  "She is happy.  She has and has had a good life and isn't suffering."

As they turned to go, he said "I hope to see you both back here again."  Lyn stopped in her tracks and replied "We always come back."  Mom shrugged and followed Lyn to the car.

Wednesday, May 21, 2014

A Forgotten Face and Name

There's a plant nursery that Mom has used for years when she's looking to put flowers in her patio pots.  The staff are always helpful and know Mom and Lyn by name.

One employee in particular was Lyn's favorite.  She is friendly and would encourage Lyn to pick out a flower "just because" on more than one occasion.  This employee was there this weekend with Mom and Lyn walked in to pay for their selections.  She called out a "Good morning!" to them as they entered and was quickly puzzled when Lyn clearly didn't recognize her despite responding to the greeting.  Mom realized Lyn had no clue that the employee was a known face and name.  Unfortunately, the employee knew it was more than just an off day and was concerned about Lyn's welfare.

Mom asked Lyn if she wanted to go unlock the car.  Lyn took the keys and shuffled off.  Mom took the moment to explain to the employee about Lyn's Alzheimer's.  The employee almost cried.  She stated she had noted some decline over the past year.  She was shocked that Lyn no longer recognizes her though.  

I think this is the first time that Lyn has noticeably forgotten a person.

Tuesday, May 20, 2014

Too Dark

Mom decided her front door needed a fresh coat of paint.  The house is stucco brown, the unofficial state color of New Mexico, and the door was the same.  Mom picked out a nice dark green to improve the door's appearance.  

While Lyn was out on Saturday, she painted the first coat on the door.  Shortly after she was done, Lyn returned home with her respite provider.  She walked into the house through the front door and didn't notice the color change.  If the respite provider noticed, she didn't comment.  After the provider left, Mom told Lyn that she had changed something.  Lyn immediately told her to not make her guess because she was tired and her brain "just can't take guessing."  

Mom ended up having to help Lyn out of her chair to guide her to the front door.  The door was sitting open to the room.  The green was facing Lyn as they approached it.  When they were in front of it, Mom told Lyn she had painted and the green was the new color.  Lyn looked and said "Too dark.   I don't like it."  She then followed up by saying no one would like it.  

Later, Lyn told me it was too dark.  What struck me was the tone of voice and the phrasing was just like Grandma!  The negative tone was the hallmark of my Grandmother's last few years.  In the Alzheimer's community, care takers are regularly reminded "It is the disease talking."  Apparently, the disease sounds like Grandma.

Monday, May 19, 2014

On The Floor

Mom has no idea why Lyn decided to lay on the floor.
Lyn didn't know why either.

Nikka didn't know why and it worried her.  When Nikka's worried about Lyn, she seeks physical contact.

Lyn continued laying on the floor for some time.  She was calm, even when Nikka sat on her.

This is one of those inexplicable things about Alzheimer's.  She does something and there's no real explanation beyond "It seemed like the thing to do at that moment."

One of the things we can explain is the pacing.  Lyn has started pacing in the evening.  She'll walk about 10 steps, turn 180 degrees, walk and turn, walk and turn.  The pacing is a common behavior with Alzheimer's patients and may indicate that the individual needs to use the restroom but no longer recognizes their body's cue's.  It can be a manifestation of anxiety.

Our weekly Skype conversation was interrupted by Lyn leaving the room to pace.  She returned a few minutes later to cry on Mom's shoulder.   She was tired and that always leads to anxiety that is hard for Lyn to understand.  She cried for a few moments and then took the suggestion to go take a bath.

Lyn's pacing is, I believe, a physical expression of her anxiety.  The triggers seem to be the time of day and fatigue.  Those are part of her Sundowning but they're getting more pronounced.  She now even wants to come home for the day and be in for the evening by 2pm.  She likes 2pm.  Later worries her.

Thursday, May 15, 2014

Free Dementia Webinar

The Cure Alzheimer's Fund is hosting a free webinar (web + seminar = webinar) on May 28 at 3pm Eastern.  There is no registration required.  The webinar is titled "Mission Critical: Save the Synapses."  The session will provide you with an opportunity to listen in on a conversation with Dr. Roberto Malinow who studies the way Alzheimer's weakens synaptic connections at the University of California, San Diego.

If you have the time to watch, I encourage you to attend.  Unfortunately, I'm typically in a meeting at that time and don't believe I'll be able to listen in for myself.  I am hoping the Fund records the webinar and makes it available for future viewing.

Wednesday, May 14, 2014

A Cartoonist's View

Cartoons or comics are not all comedy.  They can be used to explore challenging issues.  "Take Care, Son" by Tony Husband is one cartoonist's examination of dementia.  It is sweet and poignant and worth a read.

Tuesday, May 13, 2014

Let's Talk Dating

You might want to sit down for this discussion.  I know I am.

People with Alzheimer's date.  They appear to fall in love again.  They at least try to form new connections that bring them comfort.  They might even have sexual relations.  It must be exciting to be in the first blush of a new relationship again.

When you think of intimacy and Alzheimer's, you really only consider individuals who are geriatric; not someone who is not yet menopausal.  When you have early on-set Alzheimer's, the patient may still be young enough to potentially get pregnant.

No, Lyn's not pregnant.  However, she announced last week that she has a new boyfriend and she does.  She's known him for several years because they used to attend the same weekly social event.  His care provider and her respite provider are friends as well.  They arranged for the two to spend some time at a local bar singing karaoke last week.

So... what does this mean?  It means that Lyn is getting direct, one-on-one attention from a man.  She always delights in that and loves flirting.  That makes her happy.  Happy is good.  Boundaries are also good.  She's not so good at boundaries anymore.  This puts an even bigger responsibility on her respite provider to provide proper supervision when Lyn is with her boyfriend.

Monday, May 12, 2014

Even On Mother's Day

Mom writes of her Mother's Day recognition from Lyn:

"The Knights of Columbus members were selling artificial roses for $1 for Mother's Day at Church Saturday evening.  She wanted to buy one for me so I told her to go ahead since Father wanted to tell me something.  She came back into the Church to say they were out of red ones and she wanted to get a yellow one.  

I said 'I love yellow roses.'  

'OK, give me $1 and I'll get one.'  I reminded her she had several dollar bills but guess what?  

'I don't want to spend mine.  So, I need one of yours.'  Keeping a straight face, I gave her one.  I have a pretty yellow rose."

When we Skyped on Sunday, Lyn showed me the rose.  I asked her if it was a real rose.  She studied it for a minute before shrugging as she said "I don't know."  We agreed it was a real silk rose.  

During the conversation, Mom also showed me the Mother's Day card that Lyn made at day hab.  Lyn wrote "Moom Love"  

I love that she can still spell "love" even if she struggles to spell Mom.  

Thursday, May 8, 2014

Buying Lunch

This weekend, Lyn and Mom went shopping with their lovely neighbor.  When they were done, Lyn pointed out that they had been together all day and she had money in her purse and she wanted to buy lunch for them.  Mom asked Lyn how much she had and then regretted asking because Lyn dove into her purse to dig it out and start counting.  Mom redirected her and convinced her to wait until they got to the car to count her money.

As soon as the car door was closed, Lyn dove into her purse again and reported that she had a $10, a couple of $5s and some $1s.  Having an idea of how much cash Lyn had on hand, Mom asked where she wanted to go and got an immediate "Wendy's!"  Wendy's is a fast-food chain where Lyn used to work.  Mom knew where the nearest Wendy's was located and that Lyn would have plenty in her purse to cover lunch for the three of them because neither Mom nor their neighbor was hungry.

After the order was placed, the employee reported the total was just under $13.  Mom suggested to Lyn that she hand the employee the $10 and one of her $5s.  "No!  I'm not going to spend the $5s.  I'm saving those!"  Lyn was adamant.  "I might need them at day hab."  Mom pointed out that if you offer to pay lunch for someone that you don't hold back half of the available funds like that.

Fortunately, Lyn had plenty of $1s on hand and could pay the tab without spending one of her $5s.

Wednesday, May 7, 2014

Looking For Risk Factors

The UK Biobank is the worlds largest and most detailed collection of biomedical information collected from 500,000 survey participants.  Participants were aged 40-69 years when they initially submitted their demographic, lifestyle, and health information along with samples of their blood, urine and saliva.  Their anonymized information and samples are made available for research into why some develop a condition while others do not.

One of studies which is getting underway is looking to examine the cognitive functions of the 500,000 participants.  Participants will be able to log in and take a series of cognitive tests.  These tests are a repeat of tests they completed when they enrolled in the Biobank's program, allowing the researchers to compare results and look for risk factors which may lead some of the participants to develop Alzheimer's or another dementia.

Tuesday, May 6, 2014

Of Zippers and Snaps

Lyn's lost a few pounds over the past couple of months.  She's been cooperative with trying to limit her soda intake to one a day.  As a result, the belt she wears is no longer just because she likes wearing it.  It is necessary to help keep her pants in place.

She's not interested in shopping for new pants.  She likes the pants she wears and doesn't want to change them for a smaller, more fitted size.  She fiends the pants she currently has easy to deal with.  She recently bragged to me about how happy she is that she no longer has to undo the zippers or snaps to get the pants on or off.  She can just pull them up or down.  She really likes this and views it as an added bonus.

Mom had noticed that Lyn has started zipping the pants shut when she folds them if they come open in the wash.  When Mom went to wash Lyns laundry for her last week, she realized that none of the pants were open.  She also realized that Lyn actively fusses at her if she doesn't keep them closed when doing Lyn's laundry.

So, I now wonder, is she finding it increasingly difficult to open and close the zippers and snaps on her pants when she's wearing them?  She can still do them if they are in front of her like an early childhood activity doll, but can she still do it when it is in a different position?

Monday, May 5, 2014

The Things She Says

Anymore, you never know what Lyn is going to say.  Sometimes, she can be ugly in her use of words.    It is not always intentionally ugly, but her grasp of social niceties is slipping.  Other times, it is hard to not laugh at the things she says.

Last week, when asked what she wanted for lunch, she responded with "Tater tots and chips."  When Mom suggested that was not the best selection, Lyn guessed that she could eat a grilled cheese sandwich with tater tots.

Also, last week, while on the way to day hab, Lyn told Mom "I have a project for you to do today.  I need my sink cleaned.  But, do you think you could do a good job this time?"

Friday, May 2, 2014


In reading the news yesterday, I came across an article about the FaceDementia app.  It is an online experience which uses your own FaceBook information to try to give you some insight into what a person with dementia experiences.  FaceDementia doesn't keep your data once you let it access your FaceBook account.  However, it uses pictures or status updates you have posted to illustrate the loss of memories or the onset of  confusion.  

FaceDementia is an interesting experience and has left me feeling a bit morose.   However, it may actually be an effective educational tool.  So, I do encourage you to give it a try.  

Thursday, May 1, 2014

I'll Take You

This video has been making the rounds on the net this week.  In case you haven't seen it, I encourage you to watch.  It is very sweet.

The video was made by Lisa Abeyta.  She's received a tremendous amount of positive feedback as a result of the video which she addresses on her blog.

Leave it to the dogs to keep the communication flowing.  Well done, Roscoe!