Monday, November 30, 2015

Dialing

I've had to laugh at myself a lot recently.

I call Mom multiple times a week.  Her phone number is programmed into my house phone as well as my ell phone.  I don't rely upon a speed dial code.  I have long been in the habit of dialing her number fully each time I call.  I don't know why.  I just do it.

Lately, when I dialed, I would have to hang up and dial again, stopping myself before the number was complete and connecting the call.  I realized that each time, I was dialing the number that was Grandma's for decades.  I would dial the area code and exchange and start on the last four digits when it would hit me that I was dialing the wrong number.

I have no idea why this number kept popping up.  Clearly, some connections between neurons were firing.  I told Mom about it and her response was "Don't tell me you've got it too!"  I don't.

It just fascinates me that we know so little about how our brains work.  Why was the number being dialed without me even thinking about it?  Why was I recalling my Grandparents' number?  What triggered that memory and maintained it for so many days?

In the past week, the number has stopped popping up for me.

Thursday, November 26, 2015

Thanksgiving 2015


May you have a day full of happiness and peace.  
May you have food on your plate and a warm place to rest your feet.  
May you have a cold nose and a warm heart to keep you company, if you are so inclined.
May you have good weather and safe travels.
May the miles between you and your loved ones not be a burden or a barrier to your happiness.


Wednesday, November 25, 2015

Michelle's Husband

A couple of months ago, Lyn saw President Obama on television.  Mom asked her if she knew who he was and Lyn delivered The Look at epic levels.  "He's Michelle Obama's husband."

Lyn's response tickled Mom.  She agreed.  Lyn was right.  Mom pointed out that he's also the President.  Lyn, of course, "knew that but he's Michelle's husband."  For whatever reason, his role as Michelle's husband was more important or memorable to Lyn than his role as President.

Mom wrote a quick note to the First Lady, hoping that she too would find it funny.  Mom's note explained a bit about Lyn and Nikka so that Mrs. Obama would have context for the note.

Yesterday, a large envelope was delivered to their door.  Inside, Mom found a personally written note from the First Lady.  Mrs. Obama mentioned Nikka in the note.  Lyn was very excited!  Mrs. Obama included a picture of herself with her dog Bo.  Lyn loves the picture but thinks "they should get a Pit."




Tuesday, November 24, 2015

Planning for Santa


Lyn's thinking ahead and planning for Santa.  

She's already announced that he's going to bring her a surprise.  She's not sure what it is and doesn't know what she wants him to bring her but she just knows he'll surprise her.

She asked Mom "Do you think this year when she calls Santa Clause, I can pick the picture he uses?" She was thinking of the Portable North Pole videos I've set up for her the past few years.  Mom sputtered for a few moments, trying to come up with a response.  Finally, she gave up and offered "No.  He chooses the pictures he wants."  Lyn doesn't know I supply the pictures.



Monday, November 23, 2015

Sundowning Strongly

Last week, Mom had a meeting to attend in the evening for her Home Owners Association (HOA).  The quarterly meetings are held at the local police stations about 2 miles from the house.  Lyn has always gone with Mom even if the meeting is after dark.  She just takes a dose of her medication to try and keep the Sundowner's anxiety under control.

Last week's meeting was short.  They didn't have a quorum and couldn't get the business of the day resolved.  They did answer some questions posed by one of the community members who attended but were done in well under an hour.  Mom could tell Lyn was anxious to leave and they were quickly in the car on the way home.

Lyn didn't know where they were.  She didn't know the way home.  Lyn was so frightened she was shaking and sobbing as she demanded that they go straight home.  She didn't want Mom to stop anywhere.  Mom assured her they were going home but explained she had to stop.  Before Mom could say "...at the red lights", Lyn wailed "No!! Don't stop anywhere!"  Mom was able to convince Lyn that red light stops were required.

Lyn's getting more and more afraid of being out of the house after dark.

Friday, November 20, 2015

Mrs. J

Let me take a quick diversion of our usual blog topic to say good bye to Mrs. J.

Mrs. J passed away this week after fighting cancer.  She lived long enough to meet her newest grandchild.

Mrs. J and her husband ran the Explorer Troop with the Sheriff's office there in Albuquerque for many years.  My brother was very involved with the organization through middle and high school.  Mrs. J was a force to be reckoned with and our families have maintained a connection ever since.  She loved her family and the kids who participated in the Troop.  She was kind to my sister.

She passed at home with her husband at her side.


Dormit in pace.

Wednesday, November 18, 2015

Unintentional Slimming

Lyn lost three pounds between her recent visit with her doctor in which she was diagnosed with a sinus infection and her visit a week later when it was bronchitis.

She's not exercising regularly and not on a diet.  She's not eating much though.  She's often not hungry and really has very little interest in food anymore.  We've also noticed she's starting to complain of a stomach ache after she eats.  She can't smell.  She can't really taste as a result.  She doesn't get pleasure from eating and would probably forget to eat if Mom didn't prompt her.

The weight loss doesn't happen with each visit.  However, it is steady and pretty consistent.  She has not registered a weight game in over two years.  While she's been over-weight (as are we all) for some time, the weight loss isn't a great thing either.  It is another symptom of her disease progression.



Tuesday, November 17, 2015

Double Time Changes

I've been putting off this post but procrastination doesn't change the reality of the situation.  The changes are happening quickly right now.

She's forgetting more words.  She is definitely using common words but is struggling with longer words.  This weekend, she tripped over "accident."  The conversations with her have her searching for words and trying to cover but her covering is less refined that it was even this summer.

Her vocabulary is not only reducing but she has less mental flexibility for the words that others use.  If you use a preposition and you could have just used an adjective, she will correct you.  I think she's having a harder time breaking down the sentence with the prepositions.  For example, recently, Mom reminded Lyn her gloves were "in the pockets of your coat."  Lyn countered with "No.  They're in my coat pockets."

Mom is now having to set out clothes for Lyn most days.  There are days when Lyn will completely overlook the clothes Mom sets out and then is terribly confused in getting dressed.  She calls it "being in La-La Land" and she doesn't like it.  On the La-La Land days, she struggles to remember what to do next.  Mom will ask if she's made her bed and Lyn will respond with something along the lines of "No.  Should I?"  When Mom responds with "Yes", Lyn will wander off to her bedroom.  Mom gives it a few minutes and then goes to check on her.  Several times now, she finds Lyn just standing, staring at her bed without a clue of where to begin or what she's supposed to do.  Mom will prompt her with a reminder that she knows how to make her bed.  Currently, this approach stirs the brain and she's able to start moving again.  Once she starts, she's still able to make it and does a good job.

She still wants to put order to things.  It bothers her to see her beads out of order but she cannot manage sorting them much any more.  They're too small.  This weekend, she was unhappy that her crayons were "mixed up in the box (she) puts them in."  She tried to sort them but found all of the shades confusing even though she was doing a good job of sorting.  She gave that up and dumped them back into the box, still bothered they were mixed up.


She will wander from task to task, unsure of what to do.  Transitions are hard and when you don't have the mental stamina to stick with anything there's a lot of transitions in your day.

Monday, November 16, 2015

Hoping to Re-Evaluate

When Lyn was originally diagnosed, she went through a neuropsych eval.  It wasn't a positive experience and Lyn remembers that the person who performed the evaluation made her cry and Lyn didn't like her.  We had decided then that in a few years we may try to repeat the evacuation to see how she's progressed.  Lyn's doctor would like Lyn to undergo another neuropsych evaluation as well.    At this point, we don't think we're going to be successful in making that happen.

In late July, Lyn's doctor filled out the request form to request a neuropsych evaluation be performed by the clinic at UNMH who evaluated Lyn a couple of years ago.  After a long wait, we have heard back from them and the answer is that the "doctors have declined to to see this client."  No additional answer is provided and Lyn's physician has been unable to get a response either.

We suspected that Lyn would be declined by the university's hospital and reached out to a clinician recommended by Lyn's behavioral therapist who indicated this clinician "works with out population and does this testing."  We've submitted two requests because the first one disappeared.  There's crickets there too now.  Based off the amount of time which has passed and the fact that they are not returning any calls, we suspect that clinician is also declining to see her.

The challenge is that there are very few places to get an evaluation done.  Perhaps they are full.  Perhaps they have reviewed her file and determined that it is a moot point to re-evaluate her.  She has Alzheimers and we know she has the disease.  We know it is progressive and terminal so, why bother?

It is not a life or death situation.  We know she's declining.  We can see it.  However, I think her doctor is interested from a medical perspective to determine where she is in the course of the disease. We are as well.  It is disappointing but it won't change the course of her care or the outcome of her disease.

Friday, November 13, 2015

A Doctor and an Spontaneous Visit

Lyn was back at the doctor's office yesterday.  She's now been diagnosed with a case of bronchitis.  A new prescription has been filled and she'll be seen again in a few days if she's not better.  This totally explains the lack of even her regular level of stamina and the cough.  She's not been observed to have a fever.

Yesterday's activities included a stop at a favored restaurant after the doctor's office where she and Mom had an unplanned meal with one of my childhood friends.  Mom and Lyn had been seated for only a minute or two when my friend walked in with her mother-in-law.  Seeing the line of waiting guests, they were about to leave when Mom caught their attention and waved them over.  The two ladies joined Mom and Lyn at their table, avoiding the wait or the need to go elsewhere.

Both families report to me that they had and enjoyable meal together.  I'm glad they had the chance encounter.  I'm sure it brightened the day for Mom and Lyn.  Both love visiting with friends and family.

Wednesday, November 11, 2015

The Merry Go Round

When you ask an Alzheimer's caregiver how they are doing and how is the person for which they are caring, you might find yourself thinking that you've heard certain phrases before.  

You'll hear things like "Our new normal is..." or "I think he's transitioning again..."  You may hear litanies of skills lost, changed preferences, and new behaviors.  You'll hear of accommodations made, appointments kept and doctor's advice.  You'll realize, if you stick around long enough or ask frequently enough that there seems to be a pattern and some of these phrases are trotted out more than once.

You'd be right.

The fact of the matter is Alzheimer's seems to be a cyclical disease.  The decline comes in fits and sprouts.  The process is slow enough that we can measure and mark the changes.  We have time to adjust and to accommodate the changes.  We have time to put on the cloak of "our new normal" and wear it in public, presenting a face of acknowledgement if not outright acceptance.  What other choice is there?

To rail against it when you ask would be a breach of social decorum.  Oh, there are rants.  They are reserved for those who understand.  The curious colleague or community acquaintance is not to be subjected to a moment of venting.  There's no specific rule that guides this; just the social conditioning that's endemic in our culture.  Plus, we don't want to scare you off by revealing the frustrating and bleak moments that are part of the care giver's life

So, the care giver sits on their horse going up with the good days and going down with the not-so good days repeating the same circle as the music slowly winds down until they can finally get off the merry go round.

Tuesday, November 10, 2015

Bosque in the Fall

Mom and Lyn drove down to the Bosque on Sunday to get in a little bird watching.  A family friend had let Mom know that the snow geese had returned.

The Bosque is only about an hour South of them and they can visit and return home in 4 hours.  The sky was a typical New Mexico blue on a beautiful fall day.  The snow geese where in huge flocks and Mom and Lyn spotted a couple of mule deer wandering around the field where the flock was resting.  They watched bald eagles play and a heron wade through the water.


Lyn wasn't feeling her best and even the little bit of activity wore her out.  However, she was up for looking at the birds using Grandpa's binoculars.


Monday, November 9, 2015

Importance of a Routine

This weekend was a productive one for me.  I need up speaking with Lyn and Mom via Skype twice.

I had forgotten that Lyn was going out with her respite provider on Saturday, had finished the weekend errands and decided to see if they could Skype.  I knew I was planning to spend that majority of Sunday sewing and figured a Saturday call would work.  Lyn was out but Mom accepted the chance to chat.  When Lyn arrived back home, we were still chatting and decided to break so she could get settled before resuming the conversation.

When we hung up, I figured their Sunday plans and the completed video call would keep Lyn happy.  They went to Bosque del Apache early Sunday morning, breakfast burritos in hand.  (That's the best way to kick off a day's adventure if you ask me.)  On the way back from the Bosque, Lyn wilted and cried.  She was exhausted.  She's still not feeling great and over did it on Saturday.  She wanted to speak with me.  So, when the got home, Mom called to see if we could speak on Skype.

Lyn claims she knew we spoke the day before.  I'm not convinced but that really doesn't matter.  I turned off the sewing machine and logged into my account so we could have another conversation.  From Lyn's perspective, it was Sunday and we Skype on Sunday.  So, we did.

The routine is critical for her and I should anticipate similar requests in the future.  I even have Skype on my cell phone to accommodate her schedule needs.  Technology is honestly awesome and I'm so glad we have these tools at hand.

Friday, November 6, 2015

Sinus Infection

She's fighting another sinus infection.  It has been brewing for a few days.  She's been seen by her doc and medication has been prescribed.  Hopefully, she'll have a quiet weekend and start to be on the mend.

On the plus side, she didn't loose weight between the doctor's visit yesterday and her most recent visit.

Thursday, November 5, 2015

A Diagnostic Maze

A virtual maze has been designed which can predict who may develop Alzheimers.  The person who is being evaluated tries to navigate the maze while their brain is being scanned by an MRI.  How well they navigate through the portion of the mae which does not have the same visual clues as other areas is the indicator.  This is based off the research which discovered that the brain has grid cells which allows the individual to successfully navigate through space.

My husband jokes that I am navigationally challenged (rumors, I say!).  Perhaps I too should take this test.  But, what would the test reveal if the participant can't navigate the maze without gettion motion sick.  There is a reason why I had to stop playing video games with a first-person perspective.

It is interesting though to see such tools being developed.  Ten points to Griffindor for the test being effective and non-invasive.

Tuesday, November 3, 2015

Finding the Humor

Last night, my husband and I watched Jim Breuer's comedy special "Jim Breuer: Comedy Frenzy" with our eldest.  We're familiar with Breuer's comedy having seen his earlier work on Saturday Night Live and his goat boy pieces.  This special was a bit different than his other work that I've watched in that it made me a bit uncomfortable.  I was a bit discomfited by his discussion about his father.

His father moved in with Jim and his family after his Alzheimer's diagnosis.  Jim took his father with him on tour.  At least a third of Comedy Frenzy is about his father's Alzheimer's and the reality of dealing with an adult unable to control his own bowels.  The part that particularly was difficult to watch was the revelation that his mother now had Alzheimer's.



Is it funny to hear about having to hose off his father?  Yes.  It is.  It is very funny to hear Breuer's version.  Is it acceptable to discuss dementia as part of a stand-up routine?  Yes.  Stand-up comedy can take situations we don't want to experience and present them to us in a different light.  Tig Notaro's "Hello, I have cancer" is a brilliant example of using humor to deal with life and adversity.  Did it make me uncomfortable to laugh about the Dr. Kevorkian bit?  Definitely.  Part of my brain was thinking about all of the posts I've read in an online support group to which I belong and wondering how this scenario would come across in a post.  That's my problem; not Breuer's.

He clearly loved his father.



So, if you have a chance to see Comedy Frenzy, let yourself enjoy it.  It really is a laugh!

Monday, November 2, 2015

Daylight Savings

Daylight Savings Time must be something that someone thought was good at some point.  If you're looking to get one more hour of sunlight in the summer months after your work day has ended then, you get that.  However, the practice is not universal in our country much less the world.  For someone like Lyn, Daylight Savings Time is meaningless.

Lyn has been going to bed by 5pm lately.  Her summer peak of 6 or 7 pm has diminished with the reduced sunlight.  She's also sleeping 13 to 16 hours again.  She is much more tied to the clock than the rest of us.

With the time change, we had anticipated she would be ready for bed by 3:30 or 4pm.  She wasn't.  At 5, she was finished with dinner and was coloring but wan't ready for bed yet.  By 5:27, the sun was fully down and she was in bed asleep by 5:30.  She had more energy yesterday because she hadn't gone to day hab.

We'll see where she settles herself over the next few days.