Thursday, July 24, 2014

Slam Dunk

After this weekend's Mass, Lyn greeted the priest on the steps of the church as they were leaving.  "My sister and her husband and their kids are coming to see us soon!"

"That's exciting!  Will we get to see you all when they are here?" he asked.  Lyn just shrugged in a non-committal response before bounding off to announce it to another parishioner.

The priest turned to Mom and quipped "You know she's got a slam dunk into Heaven, right?"

"I am glad one of us does!" Mom laughed.

Wednesday, July 23, 2014

Alarm Clocks

When you need an afternoon nap, you might rely on an alarm clock to help wake you up.  Lyn does too.  She just doesn't have to set her clock.  It is automatic.


Tuesday, July 22, 2014

Road Trip

In 1978, my family took a little road trip vacation around New Mexico.  New Mexico is so large, you can drive for hundreds of miles and still be in the same state.  I recently took my own kids on a road trip around some of the states near our home and it reminded me of that road trip of my childhood.

As with memories from your early childhood, I don't remember a whole lot.  I remember we had a red station wagon with faux wood panel sides.  I remember it was before the age of required seat belts and we'd sit in the very back playing card games like Go Fish or coloring as our parents drove.  I remember we visited White Sands National Park and slid down the gypsum dunes which are blindingly white.



I remember that the next day was spent at Carlsbad Caverns.  Despite wearing shorts, we needed our jackets to go through the caves comfortably.

My family and I enjoyed the road trip we just did in our part of the country.  We're also planning our trip out to NM next month.  As much as I'd like to drive the kids around NM, visiting some of these same places and having similar experiences to my 70s trip, that's just not possible now.  Lyn couldn't handle it.  It seems wrong to fly out to see them but leave them behind while we road trip too.  So, we'll let Lyn set the agenda and we'll stick close to Mom's home for our visit.

I am sure that in a few years, we'll be able to road trip NM with my kids and slide down the dunes at White Sands again.

Monday, July 21, 2014

Personal Conflict

One of the challenging aspects of Alzheimer's is that it can cause personal conflict between the person who has the disease and the people they care about or interact with most.

We've seen some of this with Lyn when she can be ugly towards Mom.  We're fortunate that she really only acts out with a snotty tone or an ugly expression.  Only once did she use foul language and that was to mutter "Well... F--- You" under her breath to me a couple of years ago.  So, why is this fortunate?  She doesn't resort to violence or rages.  She doesn't scream or throw things.  She's not tried to hit anyone at any time to the best of my knowledge.   In the Alzheimer's world, that's fortunate.

My Grandmother wasn't violent either.  Her anger was directed to cutting words like the time she disowned me.  She would pit one member of the family against another.  Usually, my Mom was the focus of her verbal and emotional attacks because Mom was her primary care giver.  Grandma was pretty high functioning for a very long time and people didn't really believe that her brain was diseased.  As a result, she could tell her sisters that Mom refused to take her to the store or church.  It didn't matter than an hour earlier Mom could come into her room and say "Mother, I'm going to the store.  Would you like to come?"

When families are in denial about what's going on or if they genuinely don't know that the personal conflict is the Alzheimer's talking, it can break a family to pieces.  Heck.  Even if they do know, the personal conflict resulting from a diseased mind can fracture families.

Grandma's sisters believed her and never questioned if Grandma's reality was different than the rest of ours.  Grandma couldn't remember if she went out in the morning.  She couldn't remember the last time she had gone out.  Thus, Mom was clearly keeping her confined to the house according to Grandma's logic.  At that time, Grandma could still tell stories about her early days.  She could listen and manipulate a conversation so that it appeared that she was following along better than she really was.

Grandma passed 13 years ago as a result of her Alzheimer's.  She has been on my mind this week and I think, at some level, I remembered it was about this time of the year when she passed.  When I spoke with Mom yesterday, she confirmed that Grandma passed on July 12, 2001.

I first met her in 1973.


She was a loving and attentive woman.  She was beautiful even though her hair had turned white in her youth and the wrinkles had framed her blue eyes.  She could be tough and acerbic when she wanted.  Her decline did fracture our family and more than a decade after her death, some of those breaks remain.  Grandma's sisters never believed Mom took good care of Grandma.  Several of them later developed Alzheimer's themselves and I have to wonder how much of the family conflict was influenced by multiple cases of Alzheimer's.

I mentioned that she disowned me.  Her Alzheimer's was evident in the early 1990's if we had realized what was going on.  In 1992, I had decided to get married and was not marrying in the faith in which I was raised.  She refused to speak with me after I spoke to her of my intentions though she never held it against my (now) husband because "it was not his fault how he was raised."  I can laugh about it now though at the time I was deeply hurt and confused by her words and actions.  It took Lyn's diagnosis and my growing understanding of Alzheimer's to realize what had happened 20 years ago.

About 18 months before she passed, I was able to see her for the last time.  I couldn't make it home just before her death because I was in the final weeks of my pregnancy and advised not to travel.  When I saw her last, she spoke to me briefly but she had no idea who I was or how I was connected to her.


I was just some nice person who came to visit.

Friday, July 18, 2014

TDP-43

A new protein has been identified at significantly higher levels in the brains of those who died of Alzheimer's than in the brains of those who didn't have Alzheimer's at the time of death.  The protein, known as TDP-43, is not new to science, having already been linked to two other neurodegenerative diseases and chronic traumatic encephalopathy.  TDP-43 is the mutated form of TAR DNA.  Everyone has TAR DNA at some level.  When functioning properly, the protein is a binding protein which attaches to DNA and RNA to provide instructions used in the creation of other proteins from genes.  However, it is the mutated form which leads to the neurodegenerative diseases.

TDP-43 is already being researched in connection with ALS and FTD.  ALS patients can develop FTD.  Not all FTD patients have ALS.  This recent research which provides substantial evidence that TDP-43 is also involved with Alzheimer's means that scientists have another possible course of study.  Additionally, the research into curing or preventing any one of the three diseases may prove beneficial to the others.

Thursday, July 17, 2014

Kansas

In 1976, my family attended a family reunion in Kansas at the home of one of my Great Aunts.  Lyn was still mostly non-verbal at that point.  Lyn had decided it was her job to take care of our young cousin and the elder generation thought it was delightful that she was so attentive to him.  His mother welcomed the attention from Lyn.  With Lyn looking out for him so well, his mother could relax and enjoy the party.

He would wander off to see what was going on elsewhere and Lyn would intercept him.  If he zigged, she zagged.  Using no words, she'd gently take him by the hand and lead him back to where she wanted him.


He never objected.  He would readily follow her.  A few minutes later, something would catch his attention and he'd wander off and the whole thing would begin again.

Wednesday, July 16, 2014

Let's Play

First, let me start with a correction.  In yesterday's post, I stated that Lyn went to a soup kitchen to feed the homeless.  I was incorrect.  She and a staff member make sandwiches in the kitchen at day hab and then take them to a nearby park to hand them out.

We now return to our regularly scheduled post.

Exercise has a wealth of positive benefits on us and there's increasing evidence that it can also help reduce our risk for Alzheimer's.  With the wave of anticipated new Alzheimer's cases on the horizon, perhaps we should all get up and move more.

While we're at it, we can play some games to boost our brain volume because that too may help reduce our risk for Alzheimer's.  Can we make cross-words a full contact sport?  Scrabble is nearly that in my house.

So forgive me for keeping this short.  I need to spend a little time on my stationary bike while doing some puzzle solving.  What will you do?