Tuesday, November 25, 2014

Dinner was Her Choice

While Lyn was here, we made sure that the food offered at each meal was something we had confidence she would eat.  There was no curry or paprikas.  Mom would have enjoyed it but Lyn wouldn't have eaten it.  The goal during the week was to cater to her needs and make her as comfortable as possible.  For the most part, we succeeded.

She was happy that we even made spaghetti and garlic bread for her one night.  This picture makes me smile because I know she was happy even though her face looks grim.

If you care for someone with dementia, this is one of the changes that takes a long time to get used to seeing.  We expect that a person's expression, even at rest, should reflect their overall emotional state.  We rely on small visual clues provided by expressions to anticipate how a person will respond to us as we engage with them.  When there's a disconnect between the person's facial expressions and their emotional state, we're left guessing and can guess incorrectly.

I really have to acknowledge how Mom works with Lyn and how she's learned to not rely upon Lyn's facial expressions for an indicator of Lyn's emotions.  The truth is that Lyn doesn't always understand her own emotions anymore.  Tears come just as easily through joy as they do through anxiety or fatigue or any other emotion.  The key is just being willing to go along with whatever is being expressed in the moment.  Mom moves along with Lyn's emotions from moment to moment.  She deserves a medal for that.

Monday, November 24, 2014

A Year Ago

A year ago this week, Lyn and Mom made the journey from New Mexico to Virginia to spend the week with my family.  The week had its challenges, but we were all glad we did it.

Looking back, it is hard to believe it was just a year.  I would have argued that it was two or three years ago until I saw the dates on the pictures which have sat on my desktop ever since.  I've looked at them every time I access my computer.  At some point, I decided to use them for this week's blog.  (That decision was months ago.)

Her face has changed so much in this past year.  Her walk is more of a shuffle than it was even a year ago.  She's more argumentative and stumbles over her words more.  She's quick to cry and struggles with anxiety.  However, she remains essentially Lyn.

She can be drawn out on certain topics and can express excitement or laughter.  She still likes to engage with handsome men, particularly those in uniform.  She likes to help and be considered helpful even if she really is not.  She still loves Nikka with a passion and howls with laughter because of the dog's antics.

She is eagerly anticipating Christmas and a message from Santa.  She assures me that as soon as Santa's website is up, she's going to email him and tell him how good she's been because she put away her clean clothes this week.  Santa will send her a message soon.  The site I've used for the past few years is back up.  I'll do it again for her this year but I'm waiting until December.

I'm happy that magic and excitement is still there for her.

Thursday, November 20, 2014

Evening Anxiety

Earlier this week, Mom took Lyn out to a very early dinner.  They were at the restaurant by 4 pm and had not gone very far from home.  When they got home, they gave me a call and we chatted for a bit. About an hour later, Mom wrote me saying:

You know how someone hugs themselves when cold?  That's how she was sitting in her chair.

I asked if she was cold.  No.
I asked if she was sad that she didn't talk to you.  No.
I asked if she was tired.  No.

Then it dawned on me.  "Are you still a little anxious from being out after dark?"  "Yes and I don't like it."  The tears began.  I got up and hugged her.  I suggested she go take a bath since she's also tired.  Forget about Wheel of Fortune.

Wednesday, November 19, 2014


Somewhere along the way, an organization was established to understand the intersection between intellectual disabilities and dementia.  The organization is the National Task Group on Intellectual Disabilities and Dementia Practices.

Their primary report is called "My Thinker's Not Working."  They also have several committees and if you're interested you can join one.  I've just added my name into the "Friends of the NTG" to get updates about their work.

Their website is full of good information.  Go check it out!

Additional Information:

Dementia in Older Adults with Intellectual Disabilities - March 2009 (PDF)
     One of the Directors of the National Task Group has research cited in this survey.

Monday, November 17, 2014

Biding Time

Yesterday afternoon, Lyn couldn't understand why Mom said we would not Skype.  Mom told her that I was fighting a migraine.  Even when she explained it as "a bad headache," it was clear that she just didn't understand why I wasn't talking with them.  I suspected this was going to be the case and made sure to call them a little later in the afternoon than normal.  

Lyn had decided to wait for my call and worked on sorting beads to bide her time.  

She hadn't touched her beads much in recent months but dug them out about two weeks ago.  When she did, she decided that they had previously been sorted all wrong.  The blue beads should not be put near the purple beads.  She dumped them all out and started sorting them again.  As you can see, she's about halfway through the sort project.  

It is a useful way for her to bide her time.  After our call, she sat back down and picked up where she had left off, a little calmer for having had our conversation.

Thursday, November 13, 2014

Aspiration and Alzheimer's

After reading the obituary for Tommy from Car Talk, I've been thinking about complications from Alzheimer's which lead to death.

As we've discussed several times before, Alzheimer's is a terminal disease which causes the brain to die over an extended period of time.  It prevents the body from healing from disease or injury.  If the body goes long enough, organs can fail and the body may even have difficulty producing its new blood leading to anemia.  If the anemia is severe enough, the individual may need blood transfusions to increase the hemoglobin allowing oxygen to be increased in the body.  (I remember my husband's grandmother received several transfusions before she passed after having Alzheimer's for many years.)  Anemia is interesting because it may be a result of malnutrition which itself may be a result of the body no longer being able to properly absorb nutrients as a result of the Alzheimer's itself.

One of the other complications is aspiration.  When the individual is in the late stages of Alzheimer's they may have difficulty swallowing when eating or drinking.  As a result, food or liquid goes down the wrong pipe and an infection can result if it is not cleared.  The other danger is that the person may die as a result of choking.

We're seeing this a bit with Lyn in the amount of drool she's constantly wiping away.  While we hope she doesn't choke or aspirate, the risk is a reality.

Wednesday, November 12, 2014

A Chunk of Cake

Mom makes a great apple cake.  The cake has a couple of layers of apple slices coated in cinnamon and sugar.  Between the layers is a heavy and super moist cake that is, in my opinion, better than a pound cake.  Perhaps it is the bit of orange juice in the batter that makes the difference.  She bakes it in a tube pan and the cake goes without frosting or even a dusting of powdered sugar.  It just doesn't need it.

She made one yesterday.  She also made a mistake.  She used a bundt pan instead of the tube pan and the cake won't come out cleanly.  Fortunately, Lyn doesn't care and is perfectly content digging out a chunk of cake directly from the pan.

There's more than one way to get some cake and she's got it figured out.