What is heavier than stone...

After our day of stone, I was hoping for an evening of diamonds.  Okay, maybe not diamonds, but at least something a little less ugly. 

Here we are, 18 hours after she got up for the day and she's still going.  She never settled down.  A double dose of medication didn't touch the agitation today.  Right now she is in the almost dark hallway searching for something.  She tries a door knob, if it is locked (and all but 2 of the 6 are) she feels around the doorjamb, bottom to top, across, then down the other side.  She then moves on to the next door.  If the door is open, she closes it and then feels the doorjamb.  On to the next door.  Searching.

You wouldn't think that simply running your fingers along some trim would create much noise, somehow it does.  When she arrives at her own opened door, she turns on the light, looks around, turns off the light and goes inside.  There she feels around the trim of her closet.  She then moves back to the hallway and starts back at the beginning.  I feel like I'm watching a live version of that children's story that never ends.  

All of this is while she is under the influence of a pill that should knocked her out two hours ago.

Our day of stone is turning into a night of lead. 

Definitely stone...

Some days go by like so many that have gone before, filled with simple frustrations, annoyances, arguments, and occasionally some laughter. For the most part, the days are often the same.

But, some days, oh, some days, the disease is especially cruel. She wakes up agitated and rarely will anything calm her. Not her medications, not distractions, not food, not trips out of the house, and definitely not kindness.

Today is one of the agitated days. She started it by getting up while it was still dark and sitting at the foot of my bed and talking. By talking, I mean non-stop barking of orders, “Get up. NOW!” “Put your shoes on and take me to breakfast. You promised!” “I said get up! NOW!”

It progressed to her poking my feet to get my attention. Ear plugs dimmed the demands. There isn't a lot that blocks someone poking your feet while you're trying to sleep.

It's now 3 o'clock in the afternoon and just the sound of her voice is killing me. I know that sounds like a huge exaggeration, but that is what it feels like right now. I'm straight lining Pandora into my ears. And while that blocks out the grating of her voice, it does increase her pantomiming around the edge of my laptop screen. Katie refuses to leave the room. I'm not sure what she is more worried about, me or her grandmother's safety if I lose it completely.

Days like this always have me mentally singing that line from an old John Denver song, “Some days are diamonds, some days are stone.” Today is definitely stone.

It would break her heart...

Before Mom's disease prevented her from being left alone, she was well known in the neighborhood.  She walked around and talked to people.  There was a family that she used to stop each day as they walked to and from school.  There were several kids in the group but even the kids in the strollers would excitedly yell, "Hi, Andi!"  They loved Mom.  She loved them.

As we got home from her doctor appointment today, the kids were passing the house.  They yelled, "Hi, Andi!"  We haven't seen them in a long time.  The kids that were in the strollers are now 7 or 8 years old.  Their mom gave them permission to run over and visit Mom. They were so excited to see her.

Unfortunately, Mom was still agitated and angry and was rather nasty to the kids.  One of them sadly asked, "Don't you remember us, Andi?"  I tried to tell them how much happiness that they brought Mom each day and explain the disease and what it meant.  They didn't understand.  Heck, most days I don't understand it either.

As they walked away I heard one of them sadly say, "I can't believe Andi doesn't remember us." 

And Alzheimer's forced a bigger wedge into the crack in my heart. 

Another day that was not okay...

We drove to Los Angeles for an appontment with Mom's neurologist that was scheduled 4 months ago.  Unfortunately, Mom had been especially combative the entire day.  We had about 30 minutes to kill before we could check in, so we went out to a small courtyard that has vending machines and seating.  I thought that would be better than making Mom sit still in the waiting room.

It wasn't.  She was argumentative and uncooperative with everyone.  She demanded that strangers help her.  She would grab them by the arm and demand that they "do something".  Most people were sympathetic but there were a few who were clearly irritated.  I had a difficult time getting her back into the building so that we could check in.

We never checked in.  It turns out that they had cancelled the appointment 2 weeks ago.  They said they sent a letter that it had been cancelled and that they called me yesterday and told me.  I'm sure that they are telling the truth (sarcasm) because I would gladly choose to put myself through that hell and the trip to Los Angeles all for the fun and excitement of it all.  Their idea of help was telling me that they had rescheduled the appointment for the end of December.  Seriously.

I told the receptionist that we needed to see someone today because Mom's condition couldn't wait until December.  She said that we didn't have any choice because there was no one there to see her.  I asked what part didn't she understand, my mother just spent a half an hour picking fights with complete strangers.  She said, "That's not right.  You need to stop her!" 

When I refused to leave, they found a very nice charge nurse who took us to see someone who was able to help us.  Not the solution I was holding out for, but a compromise that will work.  

They are lucky.  I was one step away from leaving Mom there and seeing how long it would take them to find a solution. 

I wonder what she sees...

At least once a day, Mom puts her arms together, elbows to finger tips, palms upward.  She worriedly examines the entire length for about 10-15 seconds.  Eventually she nods her head, yes, puts her hands in her lap, and moves on. 


I'm not exactly sure what it is she is expecting to find, but I am glad that she is pleased with her findings. 

Another day in paradise...

Mom has been up since before 5 am.  I'm not sure how long before, I finally looked at the time at 5.  She was on a mission, a paranoid and angry mission. 

It's been just Mom and I since about 8.  She refused to eat her breakfast despite demanding to be fed and liking what I served her.  After trying for almost a half an hour to get her to eat, I finally fed her myself.  That's a first and not a welcome addition to our routine. But, she ate every bite, so I'll keep it in mind for the future.

Breakfast was over and I was sitting quietly working on my laptop.  She looked over and in a whiny voice pleaded, "Oh, please don't do that.  They will kill me."  I asked her what it was that I was doing that bothered her.  She looked surprised and said, "You're sitting quietly just like me."  I wanted to know what I was doing that was going to get her killed.  She said, "YOU"RE GOING TO KILL ME? WHY?"  I tried to calm her and tell her that I wasn't going to kill her.  "But, you said it!  Why would you want to kill me?"  Sobbing.  "You're going to kill me and I haven't even eaten in 3 days!" 

The morning moved on from there.  She only hit me once, so that's good.  She screamed  OUCH when she did it, so that's bad.  Since no one has called the police on me yet, I'm guessing the neighbors understand what is happening. 

We did a lot more of the same before the day care van arrived.  I thanked the driver for picking Mom up.  There's nothing new in that. I then apologized that she had to pick Mom up.  That's new. 

Party over here...

I recently requested that Mom be considered for 5 days at day care instead of the 3 that she is currently attending.  I just received word that her insurance company only approved 4.  That's not the 5 that I wanted but it is one more than we have now.  That sounds like a good reason for a party to me.  

Now, I just need to know who is bringing the cake? 

Looking back...

Alzheimer's became the focus of this blog almost 3 years ago. Sometimes, I go back and read my old posts. Some of them are funny and help me to see the lighter side of this disease. But, some of them are candid looks at this disease and the havoc it wreaks.  I have mixed emotions about all that I read...

-I am a mixture of extremes. Full of patience or intolerance. Lacking faith or faithful. Angry but able to see the funny. Selfless and selfish. Loving and hateful.  Hopeful and discouraged.  I cover it all.

-Little has changed for her. With minor exceptions, she is basically still in the same stage that she was in 2½ years ago. She is still combative, angry, delusional and negative. She has no humor, compassion, or empathy. She still is able to go to the bathroom herself. She still hasn't “eaten in 3 days” but fights about any food put in front of her. Her sleep habits are a little better, her delusions a little worse.

-I am coming to grips with the fact that I have little family left. My friends and extended family offer more support and love than my own brothers.  I am grateful for all that help, but hurt by my brothers.

-I have changed.  I am now always angry. I have more faith, but feel I am undeserving of help. I have no tolerance for anything that I consider a mistake that I've made. And everything is a mistake. I have exhausted all patience. When I consider the small amount of advancement that this disease has made I am unbelievably discouraged. I want my life, back but now feel it will never happen. I am past the point of digging my way out.

This blog has been a blessing in so many ways. I am able to say what I feel with few filters and that helps to relieve the stress.  But, reading the proof of decline- mine, not hers- is both discouraging and heartbreaking to me. I don't have another 2½ years left to give her.

Just drive...

I'm having a hard time pulling myself up today.  I just want to get in my car and drive.  Well, I want to, but I don't have the energy to do it.  Or the money.  Or the time.  But, I'd like to do it.  Just drive to wherever my car takes me.  Anywhere but here.

I hate feeling this low.  I look around me and I see people with real problems.  Real world problems.  In comparison, my problems seem so trivial that I feel guilty for not dragging myself out of here.  But, I'm here.  And, apparently, I plan on staying for awhile. 

How far can do you think I can drive and still be back by 3? 

Tick tock...

So much to do.
So much to get done.
I am counting the moments until she leaves.
Tick tock.
My list is getting longer.
I have to get things done.
I think the stress of it is killing me.
Tick tock.
So much to do.
Nobody knows I'm about to implode.
Nobody cares.
Tick tock.
Is the van here yet?
I have to get it all done.
I need to care.
Tick tock.
As soon as she leaves I'll start.
I just need to start.
Tick tock.
She's off to day care.
I can start my list.
I can get something done.
Tick tock.
Get up!
Do something.
Anything!
Tick tock.
I can't move.
Start your list.
Do something before it all falls apart.
Tick tock.
I don't care.
It's falling apart.
I DON'T CARE!
Tick tock.
BOOM!

Progress...

Today was a rough day for Mom.  She was very agitated, emotional and paranoid.  That's not a great combination.  For either of us. 

Here is a brief portion of the conversation we had while sitting in McDonald's inside Walmart today:

Me:  Are you finished eating?
Mom:  Why so you can get rid of me?
Me:  No.  We just need to get some food at the store.
Mom:  I'm not going with you.  (She starts gesturing for strangers to help her.)
Me:  Mom, please don't wave at them.
Mom:  They know me and they'll help me get away.
Me:  I thought you wanted to stay with me.
Mom:  I do.  Don't leave me here.
Me:  I won't.  I want you to come with me.
Mom:  Where?  I don't want to go with you.
Me:  I thought you wanted to be with me.
Mom:  I do.  But I'm not going with you.
Me:  Okay.  Where do you want to go?
Mom:  I just told you!
Me:  Can you show me?

Mom:  NO! I'm not going anywhere with you.  I want to be with you.
Me.  Okay.  We can stay here for awhile.
Mom:  Why so that you can dump me again?  Every time we come here you do this!
Me:  I'm going to dump this trash and then leave.  You can come if you want to.
Mom:  Okay.  But, I'm keeping my drink.

The interesting part of this conversation was that although we were attracting attention, I didn't let it or her get to me.  The woman 2 tables over was very judgmental in her glares.  I smiled and did what I had to do.  We did our shopping, checked out and made it to the car.  There in my car, I fell apart just a little bit.  But, it wasn't a meltdown, so I'm calling that progress. 

How do I look? Depends...

Oh, how I wish I'd had a camera with me this morning. It was a particularly frustrating (for both of us) episode of getting Mom dressed for the day. She understood my asking her to take her shoes off (she wears them non-stop, even with her pajamas). She didn't understand anything beyond that. She doesn't allow any help. I can't touch her or she screams that I'm hurting her. So, it all has to be done though verbal directions with gestures thrown in hoping that she'll understand what I'm saying. She didn't. After several minutes of haggling and frustrations, we finally had a clean palette that needed dressing.

I handed her some diap... errr, underwear and asked her to put them on. Like most mornings, she turned them over a few times trying to figure out which was the front. She finally got a look of recognition, so I looked away... she doesn't like people watching her. Who does, right? So, I look back and she has her arms though the leg holes and was pulling the underwear on like a shirt. I couldn't help it, I laughed. Unfortunately, I was laughing too hard to stop her. Her arms were extended straight up, the crotch of her panties stuck on the top of her head. I was laughing before, now I'm close to having a seizure. I looked away to get myself under control. I looked back to see her head and one arm poking out of one leg hole, her head cocked to make it fit. Her other arm is hanging out of the other hole. The waistband was pulled down over her chest. She crookedly looked at me and said, “Does this look okay?” 

But not today...

“How people treat you defines them. How you respond defines you.” – Mastin Kipp


Tonight, my daughters and I were talking and I wondered outloud, "If something were to happen and Grandma were to end up in the hospital, I'm not sure I would call your uncle."  Which progressed to, "I'm not even sure I would call him when she dies. I guess I might text him."

When did I become that person?  When did I turn into him?  A person who, in my opinion, is a selfish, egocentric (fill in an insulting name here).   I have spent the quiet hours since then thinking and reflecting on those feelings.  I believe in forgiveness and letting go of the anger.  I thought I had let go. But, if I can't forgive him, have I really released the anger?  The previous paragraph says that I haven't.   

As I was pondering all of this, I set up a what if checklist for myself.  If she's admitted to the hospital for something non-life threatening, then I don't have to call him.  If I admit her to a permanent facility, nope, that's no different than her being with me, I still don't have to call.  If her death is imminent, then I should call.  But why?  Why should I, when he hasn't picked up the phone and called even once in the last 15 months?  Why?  Because it is the decent and kind thing to do.  I just don't feel decent and kind towards him and that reflects on my character, not his. 

I will forgive him for walking away and placing the entire responsibility for all of this on me and my children. I will forgive him because that's what I do.  But, apparently, not today.