The Lurker...

Mom may have lost some of her memories but she has made it up in the sneakiness that she has acquired.  It just makes me laugh that she thinks that she is so sly.

Katie loves to go outside in the evenings and enjoy the cool weather.  She plays or sits or just hangs around.  But, it drives Mom absolutely bonkers that "that little girl is out there all alone!"  So, Mom tries to go out.  When I ask her not to, she always listens.  For a few minutes.  But if I am distracted, she is outta here.  She'll come back in when I ask.  But, she will keep trying to slip out.  It becomes funny when she acts like she is going to get a drink of water. Next thing I know she has slipped out the back door and is bugging Katie to come in. 

Late in the evening when she is getting ready to go to bed, she will go to the kitchen many times for a drink of water.  She walks back through with her housecoat pockets bulging.  I say, "Mom? What do you have in your pockets?"  "Nothing", as she tucks the folds to hide the pockets.  I get her to show me and she has stuffed her pockets with bread.  She is so cute when she acts like she didn't put it there.  Picture a 2 year old getting caught in the cookie jar.

She will stand almost out of sight from wherever we are. We call her "The Lurker", You can hear her talking to herself and popping her knuckles.  We know she is there but it upsets her if we speak to her while her invisibility force field is in place.  Doesn't that sound like a toddler? 


But, my favorite (and most irritating, as well), is that she picks. Apparently, a small percentage of dementia patients scratch at themselves.  We spend the day doing this dance: she bends at the waist and picks at her legs, I ask her/tell her to stop. She pretends she is looking at a picture on the wall, or is pulling down the cuff of her pants, or that she has always hung her hands around her ankles like a monkey. I am never surprised when she quotes a 2 year old and says, "I didn't do it."

The upside is that she still has the capability to think through the act of being sneaky.

Happy Birthday, Mom...

Today is Mom's 78th birthday.  Here are some highlights...

"It can't be my birthday, mine is late July."

"My birthday is 3 weeks after the 4th of July"

Katie: "Happy Birthday, Gran!"
Mom: "Thanks but it would have been nice if my family had said that!"

Me: "How old are you Mom?"
Mom: "Damn. You're going to make me add aren't you?"
Me: "Only if you want to."
Mom:  "Ok. I've added it up 3 times and gotten 3 different answers"
Me: "What did you decide?"
Mom: "Well, most of them were too big so I think I'm 42."
That makes me 17 so I guess I'll accept that.

Me: "What year is it?"
Mom: 1988

She kept opening her card and saying "Wow! Did you know if you open this up you can see more sides of it?"

After opening her presents, she held up the empty box and said, "This is the nicest thing I have ever had. I have to say that I have always wanted one. Just look at the different colors!"

At the bakery I asked her which cake she would pick...
Mom: "Well, I know which one I don't want... that one has crap all over it!"

Happy Birthday, Mom!

She was your world...

This is for my daughters. I want you to remember your Grandmother and the wonderful love that she had for you.

Kylie, when you were just a toddler and skinned your first knee, you ran right by me and straight to Gran for a kiss to make it better.  I was so happy because I knew you had someone who loved you almost as much as I love you.

As a single mom, there were times when I would become overwhelmed and ready to explode.  It was Gran that you called and said, "Can you come get me?"  And it was Gran who dropped everything to listen to you.  And it was Gran that made it all better.  For both of us.

When you were both very small, it was Gran who was there when I couldn't be.  She hugged you.  She dried your tears.  She read you books.  She held you until you fell asleep. She made you laugh.  She loved you so very much.

One of her favorite things was singing to you.  Kylie, your song was "You Are My Sunshine".  I wasn't allowed to even hum it to you because that was your special song... From her.  Do you remember the Angel Bear that she bought you?  Apparently, it was made in Japan because it had the strongest accent when it sang that song. The two of you laughed yourselves silly when you first heard it.  Katie, your song was "Katie, Beautiful Katie".  Your eyes would light up when she sang that song to you.  Your songs were her way of making you feel special

Katie, it wasn't very long ago that you would sit on her lap and tell each other stories, play games or read books.  And laugh.  Oh, how the two of you laughed.  I was never a part of your playtime.  The two of you were your own little unit and that was more than enough for you.  And it was wonderful for me.  I loved the sound of your laughter. And hers.

Even as the disease started taking over, you two were in her thoughts.  As she walked home from her trips to the coffee shop, she thought of you in the little gifts she picked up.  She would bring you endless amounts of stuffed animals.  And books.  Yes, sometimes she brought you empty miniature whiskey bottles, or rotten apples, but she thought of you each time she brought a gift.  And she gave each gift with love.

And she still loves you.  More and more, she has no idea who you are to her, but she knows the love that she feels.  She made you both so happy for such a long time.  She was your world.  Now, you are hers.

I was wrong...

Remember those lessons I learned?

Turns out that I was wrong.

Lessons from a dog...

I feel like dealing with my Mom's emotions and actions is often just like having a toddler in the house.  She doesn't have the same energy or the curiosity and yearning for knowledge that toddlers have in abundance.  But, she can act as selfishly and impulsively as a 2 year old.  So, it is only natural that I compare the two situations.

When my kids were in their toddler years they really didn't go through the "terrible twos".  For the most part, I got back from them exactly what I gave.  If I was having a tense, keyed up day, they were too.  If I had an abundance of patience and time to devote to them, the day sailed by smoothly.  I am in no way implying that there weren't days that were bad.  Or that other toddlers do not go through that horribly trying time.  But for me, my attitude set the tone of their behavior.  And, just as my attitude set the tone of the household with my kids, I know that a lot of the negativity currently present in this house was coming from me and my reactions to Mom's negativity. 

We have been dog-sitting for the last week.  This dog is a sweetheart.  She liked me from the very first.  But, the second night she heard Mom become very angry and yell at me and I responded in kind.  For almost 2 days afterwards the dog would growl every time she saw me.  Apparently, before her owner rescued her as a puppy, she had been abused.  She does not like harsh, angry sounds.  So, for 2 days, I worked at re-earning her trust by keeping things calm and low keyed.  Thankfully, the dog trusts me again.

Just as important as the dog's contentment is that our household is much calmer.  Yes, Mom still gets angry and says mean things when she doesn't get her way. Just like a 2 year old.  The difference is in the way that I am responding to her. I am not letting her push the buttons that she (or a 2 year old) likes to push.  And just like when my girls were small, I still have my moments that I am frazzled and frustrated.  But they happen less frequently.  And, we are all calmer.

Who would have thought that a dog could teach this old girl new tricks?

Cranky Old Man...

A good friend posted this on her wall today... it seems appropriate to share it here:

When an old man died in the geriatric ward of a nursing home in an Australian country town, it was believed that he had nothing left of any value.
Later, when the nurses were going through his meagre possessions, They found this poem. Its quality and content so impressed the staff that copies were made and distributed to every nurse in the hospital.
One nurse took her copy to Melbourne .. The old man's sole bequest to posterity has since appeared in the Christmas editions of magazines around the country and appearing in mags for Mental Health. A slide presentation has also been made based on his simple, but eloquent, poem.
And this old man, with nothing left to give to the world, is now the author of this 'anonymous' poem winging across the Internet.


Cranky Old Man.....
What do you see nurses? . . .. . .What do you see?
What are you thinking .. . when you're looking at me?
A cranky old man, . . . . . .not very wise,
Uncertain of habit .. . . . . . . .. with faraway eyes?
Who dribbles his food .. . ... . . and makes no reply.
When you say in a loud voice . .'I do wish you'd try!'
Who seems not to notice . . .the things that you do.
And forever is losing . . . . . .. . . A sock or shoe?
Who, resisting or not . . . ... lets you do as you will,
With bathing and feeding . . . .The long day to fill?
Is that what you're thinking?. .Is that what you see?
Then open your eyes, nurse .you're not looking at me.
I'll tell you who I am . . . . .. As I sit here so still,
As I do at your bidding, .. . . . as I eat at your will.
I'm a small child of Ten . .with a father and mother,
Brothers and sisters .. . . .. . who love one another
A young boy of Sixteen . . . .. with wings on his feet
Dreaming that soon now . . .. . . a lover he'll meet.
A groom soon at Twenty . . . ..my heart gives a leap.
Remembering, the vows .. .. .that I promised to keep.
At Twenty-Five, now . . . . .I have young of my own.
Who need me to guide . . . And a secure happy home.
A man of Thirty . .. . . . . My young now grown fast,
Bound to each other . . .. With ties that should last.
At Forty, my young sons .. .have grown and are gone,
But my woman is beside me . . to see I don't mourn.
At Fifty, once more, .. ...Babies play 'round my knee,
Again, we know children . . . . My loved one and me.
Dark days are upon me . . . . My wife is now dead.
I look at the future ... . . . . I shudder with dread.
For my young are all rearing .. . . young of their own.
And I think of the years . . . And the love that I've known.
I'm now an old man . . . . . . .. and nature is cruel.
It's jest to make old age . . . . . . . look like a fool.
The body, it crumbles .. .. . grace and vigour, depart.
There is now a stone . . . where I once had a heart.
But inside this old carcass . A young man still dwells,
And now and again . . . . . my battered heart swells
I remember the joys . . . . .. . I remember the pain.
And I'm loving and living . . . . . . . life over again.
I think of the years, all too few . . .. gone too fast.
And accept the stark fact . . . that nothing can last.
So open your eyes, people .. . . . .. . . open and see.
Not a cranky old man .
Look closer . . . . see .. .. . .. .... . ME!!

She had shared this from a Facebook page called  Linda Minto's Real Life Greeting Cards

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.