Praying...

I just want one day of peace.  Just one day.  I thought we were going to have it today.  I stayed pretty mellow all day.  And, in turn, so did Mom.  The meds seemed to be helping.  But, she was restless and agitated when she went to bed.  I went in to sit with her until her final pill kicked in and relaxed her enough for her to sleep. I swear that I know that it is the disease speaking.  But, I guess I had my guard down because tonight when she was saying hateful things to me, it cut straight to my heart.  I am trying so hard to keep her home with us but I just don't know how much longer I can do this.  Tonight I am praying for strength.  And peace.

Where Mom used to live...

A stranger has moved in where Mom used to live.
She has no more gentle words, no lullabies, no kindness to give.
She spends her days cold, lonely, unknown,
in a room full of people she lives all alone.
I hate the very words, Alzheimer's disease.
It's stolen her mind, our peace, her memories.
This thief has brought us all anger and countless tears.
My mother is a stranger to herself, and lives her greatest fear.
But I have news for this disease that has taught me to hate...
It has taken so much but it will not take our Faith.
For if it does, it will truly have won.
But our Father gave us more than it can ever take, He gave us His Son.
And in His dying, my Mother will become whole and forever live on.

Update: She looks calm to me...

This is an update to my post from January 22  (She looks calm to me...)

The day after our trip through Hell I had a meeting with the Mom's doctor... the doctor's request.  I went into the office determined to get Mom, and indirectly me, some help.  I was already an emotional mess and I figured that could only help my cause.  But, I was also heartbroken that I had so misjudged the doctor and I was ticked. I thought this woman was going to be more than a doctor.  She was going to be our advocate. I knew in my heart that she cared and I was sad that I was wrong.

As we waited in the liaison's office for the "unscheduled appointment", the liaison commented that we were lucky to have a doctor that cares as much as she does. Hmmm, maybe I wasn't wrong?  And, in comes the hurried doctor.  She sits down, looks me in the eye and asks, "Nancy, do YOU want me to prescribe something to calm your mother?"  I told her yes. She asked me why and I briefly told her of the trip across town the day before. She left the room and returned with a prescription.  She told me that it wasn't that she wouldn't write the prescription.  It was that she wouldn't write it based on my brother's request.  And, since he was the one who took her to the appointment the day before, she had refused.  She felt that someone who sees Mom for 4 hours a week was not qualified to request the prescription.  She then told me that if there is anything that she could do to help me that she would try to find a way to do it.  She then hugged me while I cried tears of gratitude. 

I felt I had to write this update just to let people know that there are doctors who care.  Ones who will go the extra mile for you.  And, if you haven't found that doctor, keep looking.  They are out there.  And they can make all of the difference in the world. 

Sleeping in...

It's the weekend.  No one has to be at work or school.  The only place anyone wants to be is in bed, sleeping late.  I am in that Mom mode where I am aware of what's going on around me but still sleeping.  I hear my mother go back and forth... to her room, to the kitchen, to her room, to the kitchen and back to her room.  I've lost count of the number of times she's made the trip.  I do know that it's still dark and I cannot bring myself to crawl out of my warm cocoon.  I know she's safe. Just as I know that most of the crackers, cookies and tea bags are being stashed in Mom's dresser.  But, darn it, I'm warm.

As I doze in and out of a dream where I am back in the Army, I am vaguely aware of Mom offering bread   to my sleeping daughters.  The 12 year old is offered some to take to her wife.  In my dream I am having trouble finding my barracks room.  I opened the wrong door and apparently the occupants did not want to be woken up either.  I was running out of the room when suddenly I open my eyes to 2 slices of white bread a few inches in front of my face.  I knocked them away from me to the sound of Mom's scream!  But all is not lost, Mom pulls 2 more slices of bread from deep in her pajama pocket as she says, "Here. Take these. They're the clean ones." 

You have been warned...

Mom has said many things that are, shall we say, a little off color.  She twists words until the meaning is borderline offensive but hilarious as anything I have ever heard.  I have hesitated to share them because I felt they were an invasion of her personal privacy.  But, I've realized that it isn't an invasion because she never meant to say what she said or ever did what she said she did.  So, if you're still following my warped explanation, you have been warned.

These all happened at separate times:

My daughters and I were sitting in the living room one evening when Mom poked her head into the room and announced, "I just wanted you all to know that I am through playing with myself now."   Good to know.  Thanks, Mom.

Mom and I were shopping at Target and a woman commented to Mom that she had a beautiful, full head of hair.  Mom responded, "If you think that's a lot, you should see down there!"  No further explanation will be coming with that one.

I was sitting in the dark next to Mom's bed, waiting for her to fall asleep when Mom started moving around. She starts moaning and says, "Oh, YES! That's it. Right there! That feels SOOOO good. OH! Yes! Right there! Oh, thank you!! That is so good!"  She was scratching her leg.

The next evening, my oldest daughter was sitting with her when her Grandmother said, "You'll need to leave soon because those 3 boys are coming back tonight and they won't want you watching." Apparently, they like to scratch legs privately. 

But my favorite has to be tonight when she looked at me and said, "I love you. I mean, I love you like a sister, not like a horse that I want to take for a ride."

That animal is not moving...

Today in the sad but funny department: 

I have spent the last 20 minutes pointing out to Mom that the vacuum cleaner sitting in the corner is not a dog, cat, human or horse.  She is adamant that "that animal is not moving!".  I walk her over and show her that is, indeed, a vacuum.  "Oh, I beg your pardon!".  As she sits back down she says, "Even if it is a vacuum, it still isn't moving."

It is still a choice...

Many moons ago, or to be more exact, 12 moons ago, I posted an entry to my blog entitled "What do you choose...".  There is a link at the bottom if you would like to read it.  In that blog, I discussed the option of being happy.  I decided that happiness is a choice and that it was my choice.

The other day a young man, whom I greatly respect, pointed out that being happy is a choice, and it made me reconsider my answer.  He was referring to my reaction to the situation with my mother.  So, am I still able to choose happy?  Yes, I am.  And, no I'm not.

I am happy.  I love my girls.  I enjoy most areas my life.  I laugh easily.  I find pleasure in simple things.  I try to make those around me happy.  But, and this is a big but, I cannot choose to be happy at all times in this situation.   If I could choose happy during every one of Mom's episodes, I would not.  What we witness on a daily basis is not something to be happy about.  It is something to grieve.  It is something to dread.  It is something to abhor. My mother's condition and what it has done to my family makes me profoundly sad.  It breaks my heart that my children see me in a state of despair and frustration so often.  But asking me to be happy, just so those around me can always be happy, is not something that I am able to do.

While I write these words for me and my sanity, I like to think that I am shedding light on this disease for those who choose to read them.  For the thousands of words that I have written, I have thousands more that go unsaid.  There are some things that are too painful to write and more that are too devastating to share..  Even for me.  So, yes, being happy is a choice but it is not one that I can always make.

http://nancysnotesonnothing.blogspot.com/2012/02/what-do-you-choose.html

A thorn by any other name...

Just a quick funny in an otherwise crappy day...

We overhear Mom praying.  A lot.  She talks to God often and loudly.  So, tonight when we arrived safely home from our trip through Hell, I hear Mom in the hallway praying, "Dear God, please help me. Oh, this is Andrea, but people call me Irene." 

She looks calm to me...

If you are hoping for one of my rare, positive posts full of sunshine and unicorns, then you might want to come back another day.  Because today was one of the worst experiences I have ever had.

Mom and I were going out to the car to pick up my daughter from work.  But, instead of stopping at the car to get in, she kept walking.  Down the driveway, across the street and away.  I knew following her on foot would be futile because then I would have to find away to get her to come back.  So, here is this woman who walks around the house like she is an old, feeble woman practically trotting down the street trying to make her getaway.

So, I follow her in the car out on to the busy, main road, trying to keep my car between her and the street.so that she doesn't get hit by a car.  Cars are slamming on their brakes and honking at me as I try to coax her into the car.  But the stars were with me as she finally got into the front seat.  Or were they?

I pulled onto a side street to get her buckled up.  It was my first time using the new seat belt guard that I just bought. For the lucky who have never had a need for a seat belt guard ... it is just a piece of plastic that prevents the red release button from being activated.  The guard went on very simply and Mom didn't realize that it was even there.  But, she was immediately very agitated and combative.  Within a mile she was clawing at the seat belt guard trying to get out of the car.  She was convinced that I was "taking her away".  Those are words that have never been said, or even hinted at, so, it was a little surprising and hurtful to me.

By the first red light, she had put the chest portion of the belt over her head and opened the car door into traffic.  I was trying to close the door as she was screaming at me and trying to stop me.  I ended up honking at the car next to me, trying to get the woman's attention to help me get the car door closed.  I couldn't drive with my mom's legs hanging out of the car.  But, I couldn't stay still or she would have found a way to get out.  People were honking and staring with eyes of shock.  I was praying that someone would call the police and they would take my mom away.  Praying that someone, anyone, would help me.

Somehow, I got her back into the car.  The seat belt was still engaged.  Now, I just had 4 more miles of stop and go traffic to make it through.  Let me just say that it was a ride straight out of Hell.  I have never had an experience like that and I don't want to have one again.  Driving while holding the passenger door shut is not safe.  Nor is it the smart thing to do.  But, to be honest, I am not sure what the smart thing would have been.

We arrived to pick up my daughter.  My poor daughter walked out to a mother who was sobbing and a grandmother who was still trying to get out of the car.

And this entire time I am thinking of the doctor, who just today, told us that she couldn't prescribe anything to calm my mother... and that "she looks calm to me".  Really?  And how about me?  Do I look calm as I am navigating traffic while leaning over restraining a grown woman and holding a car door shut.  Do I look calm, Doctor? 

"Mommy, I don't feel good..."

I have been thinking a lot these past few days of the days in my childhood when my mommy was the only thing that made me feel better.  I remember once in High School going to the nurse's office and solemnly explaining why I needed to call my mom.  And just as soon as Mom answered the the phone, blurting out in tears, "Mommy, I don't feel good."  I always felt so childish with the nurse looking on at my tears.

But I miss that childish feeling now.  I have been feeling crappy for a couple of weeks, some days worse than others.  So, it is so hard for me to have my mother here and have no concept of anything outside of her own world.  Everything revolves around her and her feelings.  It's just one more thing that this disease has taken from us. But, this time it I don't care if I sound childish.  I just want my mommy.

Episodes...

Well, it's been a fun few days. What I call Mom's episodes are becoming more frequent and last longer.  She works herself up and becomes agitated about nothing.  And nothing is relative.  It is nothing to me, but everything to her. 

Yesterday we were in the car, waiting in line to pick up Katie at school.  Normally, Mom will sit and just people watch while providing me with a running commentary of everyone's movements.  But, something was different.  This time she suddenly started saying that even if Katie was in the school that she didn't know where to find us.  It progressed to her belief that it wasn't actually a school and that Katie left hours before.  After several variations of this, it ended up with her being convinced that if she moved through the gates and into the school that they were going to kill her.  If you have ever talked to a mentally ill person, you probably know that there are no right answers.  There was nothing that I said that got through to her.  I spent almost 20 minutes grasping her seat belt and holding it closed so that she could not get out of the car.  I had to roll the windows up because she was screaming for help.  I couldn't drive away while physically trying to restrain her.  I was forced to take her into the school. 

Are there solutions for this situation?  No.  But there are things that I can do to make it easier.  In the future, I will plan to leave later for the school pick up giving her less time to work herself up. And, I have found some seat belt clips that will prevent and/or slow her down if she tries to unhook her seat belt.  And, at her next doctor's appointment, I will beg for drugs to calm ME.

I won't dance, don't ask me...

Today was one of the days that I dread.  If my life was an airline flight, the Fasten Seat Belts sign would have been on for the entire day because there was non-stop turbulence on a non-stop flight.  Nothing different happened.  No major change or activity that upset Mom.  She was just keyed up and over-reacting for most of the day.  

As most of you know, I write this blog and occasionally talk about this situation on Facebook simply as a release. It relieves the tension.  I do not want sympathy.  I do not deserve a pat on the back.  I am doing this only because I have to do it.  I appreciate the comments and the support that I receive but I don't expect them. 

But, I have to be honest, I do not enjoy the comments that try to throw a positive light on the situation.  I find nothing positive about Alzheimer's. I can appreciate the comments for the attempt to bring some positivity into the situation.  But, no, I don't want to dance to the rhythm of the hammer.  And, no, I am not thankful that I still have my mother.  I would be overjoyed to still have her in my life, but she hasn't been here in a very long time.   

So, before I run everyone off with my negativity, from the bottom of my heart, I truly appreciate your comments.  They often allow me to see things in a different light.  And, I do know that sometimes what I post is funny.  Please, laugh.  And know that I see the humor.  But, please, do not ask me to dance or to be positive about this heinous disease.  I cannot and I will not. 

My eyes...

Oh, my! What a great way to finish up the day... We just called for Mom to come out for dinner.  And she did.  In her Einstein hair, Eeyore sweatshirt,mismatched knee socks and a pair of Katie's short shorts from 3 years ago pulled up to just below where her bewbs used to be. 

I am channeling Phoebe right now... "My eyes!  My eyes!".  

Mickey Mouse and his specials...

Mom just came out of her room and said, "I'd like to go down to that building I take something."  What?  "I'd like to go down to that fancy house and have something. No, Mickey Mouse and have something. That building has specials today and I'd like a frozen cream. But that was at noon and and it's 12:23."  

Well, as long as we're clear on that.

Pet food and OJ...

When I first stopped working, scratch that, when I first stopped working for pay, I did a lot of couponing.  I saved some money, picked things up cheap enough that I had a cushion for the "hard times".  But, the prep work required was too distracting and upsetting for Mom.  So, I eventually just stopped.  But, Katie has been bugging me to start again.  I think I gave her the let's-see-what-we-can-get-for-free bug.  So, she and I have been working on coupons after Mom goes to bed.  And, I remembered how fun it is.

Fast forward to our trip to Target for a coupon trip.  I made sure that Mom had a full belly and was in a good mood before we left.  We picked up some pet food, milk and orange juice and there it was... I look behind me (remember she's always at least 5 paces behind) and she is quietly sobbing as she is pushing the cart.  She is feeling sick.  So, a quick check out, a short ride and we are home.  She offers to help put our 8 items away, but I tell to go sit down until she feels better.  You know what's coming.  I know you do. She responds with, "I'm not sick. I feel fine." 

So, end of story is that the dog and cats will be eating well tonight and we will be having cereal and O.J.  Oh, and I get to add one more thing to the "I'll do that after she goes to sleep" list.

The blankets...

I washed the blankets from Mom's bed today.  Here's the conversation.

Me:  Would you go put this blanket on your bed?
Mom: On MY bed?
Me:  Yes, please.
Mom:  These?
Me: Yes, please.
Nothing
Me:  Mom?  Can you put the blankets on your bed?
Mom:  Just one?
Me:  That's fine.
Mom: For how many people?
Me:  Just for you.
Mom:  I thought other people were coming.
Me. No, just you. So, can you put it on? 
Mom:  Yes, but I'm hungry.
Me:  Ok. We'll get you something else to eat.
Mom:  Why?  I thought you wanted me to put the blankets on the bed.
Me:  I do.
Mom: Then why couldn't you just ask me.
Me:  Mom? Can you put the blankets on your bed.
Mom: NO!  I'm scared.
Me:  Of what?
Mom:  Whatever you did to the blankets.
Me:  May I put them on for you?
Mom: No. I don't need blankets.
Me:  Mom, it is Winter. You need blankets.
Mom: Ok.  You want all of them on?
Me:  Yes.  All three.
Mom:  You're going to kill me aren't you?
Me:  No.  But I need you to put the blankets on.
Mom:  Well. I'm not going to.
Me:  Ok. That's fine.  May I put them on for you?
Mom:  No. I don't even live here.
Me:  Ok.
Me:  Would you please put one of the blankets on your bed? Please?
Mom:  But I have blankets already.
Me:  No, they're right there. I washed them.
Mom:  They were washed when they were on the bed.
Me:  I washed them again. Would you put just one on?
Mom: No. There are three here.
Me:  Yes, I know. They need to go on your bed.
Mom:  No!
Mom goes to her room.
Mom:  Where are my blankets? 
Me:  Right here. They need to get put on your bed.
Mom:  Well. I'm not doing it.
Me:  Ok. That's fine. 
DD distracts her while I go put them on.
Mom:  I would have done it if you'd asked.
Me:  Go screw yourself.
Mom:  So I was supposed to screw myself before I put the blankets on the bed?

Big red button...

I did it again.  I had the nerve to try and clean the kitchen.  Mom just cannot handle it when anyone does anything that doesn't incorporate her being the center of it.  I have suggested before that Mom is still Mom but the disease has removed all filters.  And that is definitely true in this situation.  I can't count the number of  special occasions that she "upset" because of her woe-is-me act.   The holidays spent in emergency rooms only to find there was nothing wrong.  The get-togethers that were ruined by some earth shattering announcement that brought all attention to her. 

Every time she does this I can feel a big, red button being pushed in my brain.  And it is these triggers that I have the most difficulty separating from the illness.  She can be just fine and feeling well until someone's focus moves onto something or someone else.  She then becomes a wimpering, moaning invalid.  And I have no sympathy.  So, of course, the situation escalates. 

I can accept that anger is a normal reaction for me to have as a caretaker.  I gave up my career, my family's security, my social life, my children's social lives and so much more.  Yes, anger is part of it.  What I have a difficult time accepting is the nasty, venomous things that I say to her to try to get her to stop.  There is no switch to make it stop.  There is nothing that I can physically do to make the hammer stop pounding   So, the nasty, vile words that I had never in my life spoken before come spewing out.  And that is hard to accept.