Compliments, acceptance and royalty...

My aunt posted this beautiful picture on Facebook today:

This is my mom and her younger siblings.   I have 3 comments about it:

-I have always loved this picture.  I love seeing my aunt and uncle when they were children.  These two have always shared a lovely spot in my heart.  But, the thing that strikes me is how very pretty my mom looks.  She never believed that she was pretty.  As a child, when I complimented her, she always rejected it.  I never understood why.  I still don't. 

-I posted this picture on my own Facebook page.  When someone commented on the picture, I had to stop myself from responding that 2 out of these 3 kids are no longer with us.  I stopped  because 2 are actually still alive.  It was shocking to recognize how strongly that I feel that my mother is gone. 

-When my aunt posted the picture, I showed it to my mom.  Her face brightened up.  She had a genuine smile for the first time in ages.  She said, "That's my family!"  I said, "Yes, it is.  Do you know who they are?"  She responded, "I'm not sure.  The two small ones are siblings.  And, I do know that the young lady was a duchess of some sort." 

Rainy days and Fridays...

Two mornings a week it is just Mom and I together...no day care and no kids. We usually go to McDonald's for her breakfast (it's cheap and she doesn't complain) and then we wander around Walmart for an hour or so.  That early it is quiet and the people don't overwhelm her.  She becomes restless and doesn't usually want to stay at Walmart, but she needs to get out and move around.

Then we come home where she complains and begs to go out. "I want to go out... Are you ready?  You told me we could go out...  Are you ready?   You said that you'd take me... Are you ready?  Are you going to take me out or not?"  It truly is non-stop.  For hours.  Most days, I block her access to the doors and I put headphones on and play Pandora so that I don't snap at her. 

Today, I feel confident enough that she wouldn't leave that I cleared the way to allow her to get to the door. She's been threatening to leave for hours now. She has added, "If you won't take me then I'll go by myself!"  She has been picking up her purse, checking its contents and then sitting back down.  She then asks/begs me to take her for the last 15-20 minutes.  And when I don't get up, she picks up her purse again.  After about an hour and a half, she has just added her jacket into the mix.  And then hung her jacket on the vacuum cleaner in the corner of the hall.  I see her frustration and would love to be able distract and redirect her.  Everything I try is met with accusations that I lied to her about going.  It's easier and less stressful for both of us to let her accuse.

Yes, Pandora, I'm still listening... 

In the silence while waiting for the music to start back up, I am sucked into an argument.  "No, I am not going for a walk, but you are welcome to go if you want to." 

She's doing it... she's heading for the door... the door opens... and there it is...  "IT"S RAINING!  You knew it was raining!  And you're going to make me walk in THAT?"

Judge if you need to but that was fun!

Dr. Arrogant Part II...

Here's a quick recap of our visit to the neurologist's (Dr. Arrogant) office today:

The normal hour trip into the L.A. area took me only 33 minutes.  There was no traffic to speak of and I just zoomed down the freeway.  We pulled into a packed parking lot and found a front row space right in front of the door.  I actually got out and checked the space to see if the bumper was labelled for doctors only.  It wasn't... it was all mine.  We went inside and Mom let security check her purse without a fight and I didn't set off the metal detector.  It was looking to be a good visit.

As we got on the elevator, my daughter and I moved to the back while making room for Mom.  I turned around in time to see Mom stick her face into a young man's face.  As she is looking at him with a threatening attitude, she points for him to move from his spot.  His eyes got round and he moved.  He obviously was raised by his mother and knows The Look. 

We arrived at the doctor's office a full 30 minutes early.  Early means agitation.  Agitation means bad visit.  We were just sitting down when they called Mom into the office.  Things were going so well that I was staring to become nervous.

Long story short, Dr. Arrogant was Dr. Kind and gave us genuine support and help.  He adjusted her meds and wrote a new prescription for a sleep medication... just exactly what I had wanted. He told me he would back me on any decision about her care, just call him and he would help me.  

The best part of the day came from my 13 year old.  As we were waiting for the doctor to enter info into the computer, I was winking at my daughter.  Right eye, left eye, right eye, both eyes.  I didn't think much of it other than I was telling her that I love her.  After we finished up with the appointment and were walking to the car she said, "I understood the Morse code, Mom.  You called him an A-hole didn't you?"  Not today, Sweetie.  Not today.

Doctor Arrogant...

Today we return to the scene of the crime.  Okay, that's a little Drama Queenish.  We are going to see Mom's neurologist.  You might remember me mentioning him before.  He's the one who said he wouldn't offer me a donut because I needed to lose weight... yes, I'm still ticked about that one.  

Anyway, this is the 3 month follow-up of the visit that he did nothing to help us. Oh, wait.  He did pull me aside and tell me that, as a caregiver, I have a 40% higher chance of contracting a life-threatening disease. That might be a bad example of helping.  But, I know he thought he was helping, which is sad in itself.  So, we will be driving to L.A. to find out how well we followed his medical orders to do absolutely nothing to help Mom sleep.  For the most part, we have gone 3 months without any consistent sleep.  Some nights have been better than others, but I won't offer him thanks for the good ones. 

I know and understand that at some point there will be nothing that can be done for Mom other than make her as comfortable as possible.  But, I don't believe we are at that point. We have tried exactly 3 medications to calm her and/or help her sleep.  There has to be other things to try.

Regardless, we will be making the drive and tolerating the arrogance.  Maybe he will surprise me and actually offer some help... or a donut.  

Faces of a sleep killer...

I had to night-sit Mom last night.  I coined the term to describe the act of trying to quietly keep Mom in a contained area in order for my kids to get some rest.  Last night I locked us in her room and blocked the door from 2:30 until 8:00 this morning. 

As I was sitting there, I thought about all of the variations of her nighttime activities and entertained myself by naming them.  And, because I know you're dying to hear about them, here they are:

The Security Guard:  She makes the rounds.  Checks locks.  Looks into rooms.  No supervision is required because she is quiet and steady.

The Scrounger:  She searches for and hides anything of value... could be a bar of soap, a roll of toilet paper, or a loaf of bread.  Minimal supervision is required.  If you want to keep your shoes or the blanket you are sleeping with you need to keep one eye open.  Check for the availability of toilet paper before you sit down.

The Town Cryer:  "The sky is falling and it is falling NOW!  We have to get out!  NOW!"  There are many variations of this but the idea remains the same.  This requires the night-sitting that I mentioned earlier.  There is no calming her and she rarely will sleep.

The Woe is Me:  Cries all night about any number of real or imaginary complaints... "I'm lonely!"  "I'm hungry!"  Like the Town Cryer, night sitting is required.  Extra equipment:  Pandora and noise cancelling earphones.

The Thirsty Kid:  She postpones going to bed by asking for numerous drinks of water which leads to numerous potty trips.  Definitely no supervision required.

The Comforter:  She likes to tuck us in.  If you have a body part showing, she will cover it for you.  She will pet your face, your feet, or anything else that she can find.  No supervision is required but to be woken by someone feeling your face in the dark is definitely a sleep killer.

The Passive-Aggressive:  She stands in a central location where she can be heard by all and says, "It's time to get up.  NOW!"  When she receives nothing but silence in answer, she loudly says, "Okay, then you can't go with me!"  No supervision required.  Extra equipment:  Ear plugs.

The Professional Organizer:  Her bedroom light comes on and the moving begins... blankets are taken from the bed and hung on hangers in the closet... shoes are tucked under pillows... purses are hidden for security reasons.  No supervision required unless you hear something fall or there are louder than usual screams. 

The Serious Snoozer:  This is probably my favorite.  As she is getting ready for bed, she comes and gives us a very serious talk... "I am going to bed now.  Please, do not wake me up!  I plan to be there until morning. Do NOT wake me up.  PLEASE!"  No supervision required but be prepared to hear the speech more than once. 

A question of faith...

Where do you go when you are feeling alone and like you are ready to implode?  Where do you turn when you need a friendly word or a hug?  What do you do when you feel unworthy of any kind word or gesture? How do you find forgiveness for your actions and reactions to a situation that is no one's fault?  How do you accept that there is nothing that you can do to stop the torment?  What do you say to someone whose faith is being tested every moment of every day?  

If anyone asked me any one of those questions, my answer would be God.  It would be the answer for every one of the questions.  So, why is it so hard for me to make Him my answer?

I know He blesses me each and every day.  I know it.  But, I feel as if my life is split into two separate parts...  my real life and the Alzheimer's life.  I feel like all of my blessings are outside of Alzheimer's world.  I have nothing in Alzheimer's world.  And until I can resolve the two, I am destined to feel alone, unworthy, unforgiven, helpless and questioning my own faith. 

This was personal...

I took Mom to McDonald's today.  It is still the place (and the food) that seems to satisfy her.  She normally stands with me patiently while I order for her.  She will usually interrupt as she points out the display of cookies... "Did you see these?  I sure would like one of these!". 

Today was different.  I don't even know where it went wrong... or why.  I have a jumbled memory of a lot of people crowded around us.  Of Mom yelling at the girl behind the counter, "I'm not leaving until you give me mine."  Of her loudly refusing to sit "there", the same seat she usually prefers.  Of her having to be coaxed into allowing me to get her drink at the fountain.  Of turning around and her having a panicked look on her face when she couldn't remember where I went. Of her gripping a young lady's arm like it was an anchor in a storm.  Of the young lady's look of confusion and fear.  Of Mom offering food to a little girl of 4 and me trying to stop her as the girl took it.  Of me explaining to the family why their daughter was eating a stranger's food.  Of people whispering and sneaking glances at us from various tables.  I am used to seeing looks of understanding and sometimes of pity as they look at Mom.  But these looks were of disapproval. And they were directed towards me.  

And I remember the tears of embarrassment.  Those were new.  I have never been bothered by people's reaction to our situation.  But, this was personal.  And it hurt. 

A pinball wizard...

This has been a long time coming when it probably should have been obvious...

There are nights that I can do absolutely nothing to help Mom sleep. Absolutely nothing.  I believe that sometimes the disease is stronger and more determined than anything that I can do to help her.  There is just no other explanation for the random effectiveness of the remedies we have been using.  There are some nights when everything fails and she is that shiny, silver ball bouncing around inside the pinball machine... totally at the mercy of those flappers and the disease is at the controls. 

We wait for the nights that Alzheimer's offers its rare mercies.  The times when Mom sleeps unassisted for most of the night.  Or the evenings that Mom is tired and just needs a little nudge towards sleep.  These are the occasions when our nights seem almost normal. 

If the situation only involved Mom and me, the solution would simple. I would just sleep when she does.  But, in spite of Alzheimer's, I have a family and a life that doesn't allow me to sleep at 7 p.m.  Or start my day hours before dawn. 

So, I will continue to catch sleep as I can.  All while listening for the bells of the pinball machine as the ball bounces around the house.


-Mom trying to sneak a nap.  I allowed her to sleep just long enough to snap the picture. 

No right answer...

This has been an emotional and frustrating couple of weeks for me.  I don't want to go into too much detail. Let me just say that the courts have finally settled my dad's estate. The case has been in the judicial system for 8 years!   And while the outcome was originally what we felt was in Mom's best interest, that is no longer the case.  A lot has changed in 8 years.

In simple terms, I have to choose between my future financial security and, basically, my sanity.  Neither have a lot of value at this point, but it is a serious question.  And this is where the emotions and frustrations come into play.  I want to do what is right for everyone but there is no right answer.  There is no way for it to be right for anyone.

I just wish that life had a 'none of the above' option.

I lost it...

It's 3 am.  I know this because the mantel clock on the piano just struck 7 (don't ask).  I know this because I am awake and just returning from battle.  A battle that should have been a victory.  Mom went back to sleep relatively quickly.  That should be considered a success.  But the self-respect I lost getting her there definitely puts it into the loss column. 

Where is the love...

Today I read an article written by a celebrity who is dealing with dementia in her mother. I could identify with a great deal of her story.  She talked about the beginning years of the disease and how the family dealt with the changes. Early on, they confronted the social mistakes her mother made with humor and few explanations, just so people would not suspect the reality of the disease. 

After the disease had progressed for several years, her father had to call 911 because he believed he was having a heart attack.  While he was waiting for the paramedics to arrive, he was worried and stressed about his wife.  What would happen to her?  Thankfully, he was not experiencing a heart attack.  But, he was dealing with the physical effects of the stress and anxiety of being a caregiver.  All of this struck a chord with me... a painfully loud chord. 

I cried at the love that I felt in her words. But, the similarities of the situations stop here.  I think my words convey a lot of things... frustration, responsibility, anger, and resignation among them.  Rarely do I write of loving my mom.  I used to love her.  If pressed, I guess there is still love.  Unfortunately, the resentment and anger towards the disease and the situation far outweigh any love that I have left towards her.  And that is a realization worthy of tears.

Where is the peace...

This morning, as I argued with Mom over 3 slices of banana, I realized that what I miss most from Before Alzheimer's is peace.  There is very little peace in our world anymore.  And there hasn't been for a very long time.  Even while I was still at work, the phone ringing was met with apprehension.  Had Mom gotten lost again?  Was she having an episode because she didn't want to be alone?  Did she forget to take her pills or take too many?  Did the neighbors have to call 911 because she was convinced that she was dying? 

Now the peace is destroyed by late night wanderings, screams in her sleep, the listings of her miseries, and the never ending complaining. She cannot be satisfied.  She cannot be happy. She asks for things that she does not want.  She wants things that have no names.  And she cannot find peace.  She becomes angry at the sound of laughter.  She has no understanding of the pain of others.  Her entire world is her and her unhappiness.  Even her calmness is nothing more than agitation sitting down. 

But, most of the lack of peace can be traced back to me and my reactions to all of this. The 3 banana slices situation wasn't really an argument as much as a series of fragmented attempts to have a conversation.  She misunderstands the simplest of sentences and then becomes nasty when I try to explain.  I try so hard to be patient.  But, my patience ran out years ago.  My mind knows that this disease is cruel and selfish. Just reading the last paragraph re-emphasizes the horror that she confronts every day.  But, selfishly, my heart cannot abide the turmoil of it.  I'm tired of arguing about everything.  The doctor says, "Then don't argue.  You cannot win."  No I can't.  But always losing has lost all of its luster and has taken the peace with it. 

Gotta love her...

Mom woke me up at 4am this morning (after not going to bed until 11 last night) to let me know that she is now a physician and she is available during regular office hours.  She then stayed awake until those hours began.

Physician, heal thyself.