Sundowner Syndrome...

It is now the time of day that I have come to dread. It is late afternoon/early evening.  It is the time that this disease turns my mother into the person that I don't like.  Harsh?  Probably.  But, it is also very true.  Everyday at dinnertime she becomes very short-tempered and frustrates easily.  She seems to come alive and becomes a nosy, nasty person.  She has an opinion on everything and everyone.  And she is mean.  I find myself cooking less and less because she has a lot of difficulty not being the center of my attention.  I feel like I have another toddler in my family.  And, just like a toddler, the more distracted I become the more disruptive she becomes.  But, teaching a toddler lessons was much easier.  It might take a few times but a child eventually learns the lesson and modifies the behavior. 

So, how do we handle it?  I'd like to say that we find ways around it.  And, sometimes we actually do.  Some nights she folds grocery bags into neat, little squares. Mom has always had a fascination with coins and for a while having her sort coins was a distraction that worked.  Now, however, she gets confused about what she was supposed to be doing and the agitation amplifies.  So, most evenings I just accept that our times as a family will be tumultuous.  My girls try to take some of the anger and aggression that is aimed at me.  And, it is with shame that I admit that sometimes I let them.

I am finding it extremely interesting to find names for experiences we are having.  In this case, it is the the Sundowner Syndrome.  This is the definition from Wiktionary:

Noun

sundowner syndrome (uncountable)

1. (medicine, psychology, psychiatry) A state of agitation, confusion, or delirium, especially in elderly patients suffering from Alzheimer's disease or other forms of dementia, which begins daily at nightfall and which is alleviated by daylight.

Basically, it means that a person's Alzeimer's symptoms become amplified each evening as the sun goes down.  They don't know the definitive cause but it  could be as simple as the person associating that time of day with a ritual of something that they looked forward to that is long gone.  Such as a spouse coming home or fixing dinner for the kids. Or possibly that the boredom of the day has taken its toll.  I don't have the answer.  But, I sure wish somebody did.

I am speechless...

2012 Alzheimer's Facts and Figures

These numbers are absolutely shocking to me. 

I will need time to digest this and put into words that I can wrap my brain around.  I am speechless.

Before...

Living through a traumatic situation, such as being a caretaker, can dull your
memories of the person  before their diagnosis.  I spent a great deal of time
today trying to remember what my mother was like before this hideous disease
demanded a place in our lives.  Here are few memories from before:

-The way she smoothed the hair away from my eyes when I put my head on
her lap when I was small.
-The smell of Henna in her hair.
-"Pull your dress over your knees, Nancy. You're a lady."  
-"Look through your glasses, not over them."
-The smell of gingerbread on a rainy afternoon.
-Laughter when, as a six year old, she tried to tell me that she could unscrew
my head by sticking her finger in my bellybutton... but it wouldn't work if I laughed.
-The gifts under the tree on Christmas morning for all five of us kids. And not a
single gift that wasn't made at school for either of my parents. Oh, the sacrifices
she made for us.
-The one day each Summer when we each got our own half gallon of ice cream
for dinner.
-The sealed, boiled cans of Eaglebrand (YUM, but don't try it...they do explode).
-"He may have started it but I WILL finish it." 
-The smell of toasted Van De Kamp's Salt Rising bread.
-"Can I just finish this chapter?"
-The word games she used to play, like the time she was tired of hearing "Mom"
constantly so we had to guess her new name before we could ask her a question.
-The lugs of Beefsteak tomatoes that she allowed us to eat like they were apples.
-The book that would fly through the air if you interrupted her reading one too
many times.
-Her total trust in me and my choices in life.
-Her fear that this would be how her life ended up.

Before...

July 4th...

We all know people (or are people) who stay home  to comfort pets during the noisy, and often raucous, 4th of July celebrations.  Those unknown and unfamiliar bangs and booms strike terror into our animal friends.  They just don't understand what the noise is about.  I saw the same fear in Mom last night.

The hints that it would be bad started days before the actual holiday.  Neighbors began setting off fireworks days ago.  Her reaction started out mildly.  I could hear her in bed saying in her stern, motherly voice, "Stop that right now!"  Or my favorite, "Do I need to come out there?"  It progressed from small intakes of breath to startled gasps.

It culminated last night in sobs of terror. She was literally scared to her bones. So, we spent the evening inside my cousin's house while all of the partying and fun was outside.  And that was okay.  I cannot imagine seeing and hearing that kind of celebration and being unable to understand what it is or why it is happening.  Each explosion was new to her.  I had to continually remind her that it was the 4th of July.  And that calmed her until she heard the next one or saw the "sky on fire". 

So, next year I will be staying home with Mom.  I can only hope and pray that words will still be able to comfort her.

Her purse...

“Her purse was a weight, ballast; it tethered her to the earth as her mind floated away.”
― Anne Lamott, Plan B: Further Thoughts on Faith 

This quote struck me right in the gut.  Mom obsesses about the location of her purse.  She can do nothing as simple as eating her lunch unless she finds her purse beforehand.  At first, I thought it was that she wants it at hand if I should suddenly decide to take her somewhere, sort of an escape plan.


But is it more?  Is it her lifeline to normalcy? A tie to her past that has always been there?  Her security blanket? 

We play "find the purse"  for what seems hours on end.  We find the purse, she hides the purse.  She has hidden it under her pillows on her bed. I have found it hanging inside a jacket in her closet.  I  found the purse empty of its contents and was forced to find each and every item in it before she could go to bed.  Recently, we couldn't find it at all. She had hidden it that well.  But, I'm a step ahead of her.  I have an extra purse with another wallet, filled with her information, for just such an occasion. Am I clever?  Not so much.  That is not HER purse.  Nor is the picture on the ID a picture of HER, "that woman is old." lol.  Two weeks after the case of the disappearing purse she walked out with it on her shoulder as if it had always been there.

So, what is it that makes that one old purse, that is falling apart, different? For her, it is, quite possibly nothing more than her tether, her ballast, just as the quote suggests.

For me it is something entirely different. Today, my brother said that Mom complained for hours that, for that purse being so new, it is sure falling apart.  And it hit me. That purse is a metaphor of her life.  In her eyes it is brand new with few memories. But, in the world's eyes it is weakening and becoming less of itself everyday, trying to stay useful, never to be discarded and forgotten.

A good day...

Mom didn't...
-argue about taking a shower.
-throw anything at me.
-cry... much.
-make anyone else cry.
-gripe because the temperature was too anything.
-have a bad day.

And that, in turn, makes it a good day.

I like that...

Recently, I have shared a lot of intense feelings.  So, this time, I'm going to lighten things up a bit.  Here are some positive things about caring for my Alzheimer's mom.

I like that...
-re-gifting doesn't offend her. Each and every time she receives something is the first time.
-every gift is the "best thing that I have ever gotten."
-she no longer cares what anyone thinks.
-she thinks that I need help with my "duties" in the bathroom. No, that one pisses me off. Oh, look a pun.
-she has become invisible. We don't see her lurking in the hallway peeking around the corner at us.
-I don't have to buy newspapers. The one we have lasts us a long time.
-she finds joy in simple things, like a piece of lint.
-she tucks her butt when she thinks she's in the way.
-she thinks that she's a vacuum. She can pick up things off of the carpet for hours.
-she hits on my oldest brother.  Yes, I know that one is wrong, but I get a perverse pleasure from it.
-everyday is Sunday to her. Except Sunday, then it is Tuesday.
-we can still find humor in this situation.