Do not make her mad...

FAFLL #3 (File away for laughing later)

Mom is very stubborn. When I take her to the store she likes to walk behind me. She refuses to walk side-by-side and will not allow me to hold her hand or arm. If I stop and wait for her to catch up, she stops behind me and waits for me to start walking again... the true meaning of getting nowhere fast. It's been this way for years and I've just gotten used to it.  She always follows and as long as she is safe, I allow her the small amount of freedom.

Today she just did not want to be with me.  At all.  As I was standing in Target looking at a product, I let Mom stop about 20 feet away.  I was watching her out of the corner of my eye.  I saw her moving and looked up just as she made a beeline for an older woman who was about 20 feet beyond her. Unfortunately, her beelines are fast!  I finally caught up to them but not before Mom grabbed the woman from behind and was yanking on the arm of the woman's jacket.  Mom was yelling, “Come on! She's waiting for you! Do NOT make her mad!”  The woman had a startled expression that, while it was humorous, it wasn't laugh worthy. Oh, no. That look came as the woman saw me running at them both... her eyes were huge and I saw the very instant that the “Do not make her mad!” truly sank in.

I pulled Mom off of her, smiled, and made an apology to the woman. She looked from me to Mom and the understanding dawned. She nodded and gave me a sad smile. The entire incident was over in a flash.

The FAFLL moment is lasting much longer.

Safaris and imaginary friends...

When my youngest was very small, she had an imaginary friend named JoJo.  If anything went wrong, was broken or lost, JoJo did it.  I had to be creative in how discipline and lessons were handed out to keep from discouraging my daughter's imagination and/or reality.

Now I'm dealing with my 79 year old toddler who doesn't have an imaginary friend.  She has an entire group of people who make up her reality and friends.  And, they are as frustrating as my mother is.

It's 7:30 am, I'm sitting in my nightgown, and Mom just told me that she had to go to a safari.  Apparently, she volunteered me to be the guide.  Here is the conversation:

Mom:  Are your ready to go?
Me:  No.
Mom:  You need to stand up.  Now!
Me:  I'm not going to be a Safari guide.
Mom:  You're not?  You're going to get me fired.
Quiet.
Mom:  (voice raised) Put your shoes and socks on.  NOW!
Me:  Do NOT tell me what to do!
Mom:  I didn't.
Me:  Yes.  You did.
Mom:  I DID NOT!  That man did.
Me:  What man?
Mom:  The one who was just standing here!
Me:  Then have him be your Safari guide.
Mom:  He can't.
Me:  Why not?
Mom:  Because you need  the job. 

Just a few observations.

-Why do I even argue with her.  I have no way of "winning".  Every thing she says is true.  It is reality in Alzheimer's world.
-No, I don't need a job.  I do need a paying job.
-I miss JoJo.
-If I was leading the Safari, I would at least need time to put on my robe.

  
-

You can't make me...

I stopped by my brother's house to talk to him.  Mom is carrying an empty ice cream cup from Burger King up the driveway...

Me:  Mom, that's yucky.  Let's throw it away.
Mom:  NO! 
Me:  Mom, it's trash.  May I throw it away?
Mom:  NO!  (pulls it behind her back)  You can't make me. It's mine. It's pretty.  And I'm keeping it.
Me:  Okaaaay.

Glance at brother, who looks amused but not surprised.  We start our conversation.

Mom:  Get out of my way!  I suppose you're going to make me hold this nasty trash all day!

And, there you have a 30 second conversation that represents my current life. 

Busy work and mud pits...

Mom is on a roll today... and it isn't the good kind.  Trying not to lose my patience, I was remembering some of the silly things that she has done or said through the years. The one that came to mind happened several years ago while I was still working.

It was Summer and I had just gotten home.  Mom was outside working in the yard.  She loved to dig things up and rearrange the treasures that she liked to keep... and she liked to keep everything.  When she was through, she'd bury things and re-rearrange the same treasures.  She could keep herself busy for hours. I remember one year she dug up and threw away every rock that she could find in a 10x8 foot area of dirt.  Every rock. It took her months. But, back to my story.  On this day she had a sprinkler going full blast on that same patch of dirt.  It was now a 10x8 foot pit of rock-free, oozing mud.

I came into the yard and as I turned off the water I said, "Mom!  Why are you watering here? There's nothing here but mud!"  She responded, "Shows how much you know, when I started all that was here was dirt!"

I stand corrected.

Strange indeed...

Strange things are happening around here...

Mom has slept long and hard for 3 nights straight.  That in itself is strange.  Stranger still is the fact that she has had no help.  No tea.  No medical marijuana.  No supplements.  No medications (other than her dailies at 8 each morning).

I am writing this knowing that I have jinxed it and all will change tonight.  But, I had to share the strangeness.  I'm generous that way. 

He is still not here...

Follow up to Dave is not here, Man...  http://nancysnotesonnothing.blogspot.com/2014/01/dave-is-not-here-man.html

We've used the Medical Marijuana for 3 nights now.  The first night I brewed a "tea" for Mom.  She required 2 servings but did eventually settle down.  I think that the busyness of the day contributed to her good night of sleep though.

The second night, I brewed another tea with quite a bit more cannabis in it.  She fell into a deep sleep and it looked promising.  She did wake up crying after a few hours, but was easy to calm.  She slept for another hour before the night rapidly declined into her screaming and throwing things at the wall to get my attention. So, a typical pre-cannabis night. I finally fell into bed at 5:45 feeling very hopeless and defeated.  That's the wicked thing about exhaustion, it is so much more than being tired.  It plays with your mind, attitude and your judgement.

I woke up yesterday, adjusted my attitude and  I went to Facebook.  I posted the results and my ignorance of what I was doing.  I received many suggestions concerning what I could try or do differently. A dear friend shared some advice and a recipe for cannabis butter that was completely different (and easier) than anything that I had read online.  I made some yesterday and I put a little bit of the butter in Mom's chamomile tea with some honey.  Mom loved it and even cleaned the sides of the cup with her fingers...lol  Because the MM is entering her system through her digestive tract, it takes longer to start working.  But, within about 30-40 minutes, Mom was out.  She slept the night, no bad dreams, no temper tantrums, no wandering and no shoe throwing. 

In summary, it looks promising.  I now that I don't like the smell and that it seems to be everywhere. I know what to ask for from the dispensary. I know what doesn't work. I know that there is still so much more to learn... Like how to keep my house from smelling like a Grateful Dead concert. 

Surprise! It's my birthday...

The first rule of dealing with an Alzheimer's patient is:  Do not argue.  Whatever you say will not make one tiny shred of difference to their reality.  So, why do I allow myself to be dragged into arguing? 

Mom was very angry with me because I did not appreciate the candles on my cake.  For that matter, I didn't appreciate the cake either.  She was angry that I ignored the people who took time from their day to sing me happy birthday.  So, when I pointed out that it wasn't my birthday, that just made her angrier.   "That woman" would have had no reason to lie to her.  And, how can I argue with the proof of the cake?  People don't just bring birthday cakes for no reason! 

Oh, yeah!  I argued.  And lost.  Surprise!  Now, where's my cake?

Dave is not here, Man...

What an extremely enlightening day.

As most of you know, sleep is a rare and coveted activity in these parts. I feel I have “exhausted” most of the avenues available to me trying to find a way to get Mom to sleep through the night. I have tried the mainstream medical society's way (both medicinal and non), every natural supplement that I could find, over the counter medications, herbal teas, heating her bed, playing music, using relaxing sounds, aromatherapy, bed time routines, exercise during the day and sitting with her. Nothing has worked for more than a few nights at a time.

So, after a LOT of reading, discussions and consideration, I have chosen to treat Mom in an unconventional but promising way. Today I took Mom to a doctor and received a recommendation to use medical marijuana to help her relax. It was a choice that was not made lightly. I am sharing this decision not to start a discussion or debate, but because I have a need to be honest and open about Mom's condition and my choices of treatment.

We arrived at the doctor's office and had to wait for several people to be seen before us.  While we were waiting Mom asked the receptionist, "Who is Mary Jewana?"  

Acquiring the recommendation was quite easy and I have mixed feelings about that. The system is definitely flawed and leaves itself open for abuse. But, I was there for a legitimate reason and that is all I can concern myself with at this point. 

Once I had the recommendation for both Mom and I (as a caregiver I needed to be registered in order to purchase and transport the marijuana), I then had to find a dispensary. This was a little uncomfortable for me. While I have no objections to other people's recreational usage, I personally have never been around pot. I had no idea what any of the terms were and no idea how to buy it. Yes, I was and am a goody-2-shoes. No apologies. The dispensary I found felt very back-alleyish. I don't know if that is the norm or if it was just this place. Anyway, after I was allowed entrance to the building by the “doorman” I was presented with a small window where paperwork and forms were passed back and forth. When it was my turn, I was led to a locked door that I didn't know the secret knock that I needed for entry. Just kidding, but that's what it felt like. I entered and was assaulted with the very pungent smell of incense. Surprise, right? The woman behind the counter asked me a few questions about how I was going to use it. She then began pulling out jar after jar and telling me the names. Whoa!! Slow down with the choices!!  It was truly overwhelming. The woman was very patient and after many questions, I made my donation (purchase). I scurried to the car with my head down, my clothes and hair wreaking, my contraband stashed out of sight.

As I drove home, with all of the windows open to dissipate the smell, I kept checking my rear view mirror for blinking red lights and sirens. I just knew that people driving by were pointing at me saying, “She just bought pot!” Everything that I did was legal, but it sure didn't feel like it.

The deed is done. I've brewed some tea and tonight I will sleep well.  

Lessons from my daughter...

Today I learned two valuable lessons from my 13 year old daughter.

It has been an extremely bad day with Mom.  I was, and am, having a hard time dealing with Mom's actions today.  My daughter just walked into the room and said, "I'm expanding my vocabulary, Mom.  I think we are dealing with Ambiguous Loss."  I stopped and looked at her and asked a very intelligent, "What?"  She said, "Ambiguous Loss.  Like someone is there, like their body is there but their mind isn't." So, I stopped and looked it up.

I found a great explanation at Comfort-For-Bereavement.com (link below).  Basically, you are grieving for a person who is only with you in body.   I've talked about how I  feel when people say, "Well, at least you still have your mother."  Well, no I don't.  My mother left me many years ago.  I still have my mother's body.  All of the characteristics, qualities, quirks and traits that were my mother are dead.  We are grieving everyday. We are confronted with Mom's death every single day.  To put it in a physical perspective...  Imagine that each day that you wake with someone you love, they've lost a small part of themselves. Their body is dying a slow and painful death. The first thing that was taken was their ability to communicate. This morning it was the tip of a finger.  Tomorrow it could be a kidney.  And they are tormented by each loss. And they are angry, furious that each part has been stolen. Each day is a challenge of trial and error to learn how to compensate for the losses.  The days of right answers are destroyed with each new day.  Yet, it continues for years.  Until there is nothing left to take.  Yet, with Alzheimer's there is always something more, always a new horror.

So, my daughter's expanding vocabulary taught me a new definition and  lesson #1.  Lesson #2 was the fact that she is finding answers and ways to cope.  She is learning what she can about this situation and she is challenging her knowledge.  She is looking for ways to make sense of this.  I am so proud of the person she is and the person she will become.

http://www.comfort-for-bereavement.com/AmbiguousLoss.html

My eyes have been opened...

As I look back at the progression of this disease, I am amazed at my innocence and naivete. When I moved my family in with Mom back in 2004, it was a solution that was aimed at addressing issues that involved other family members more than Mom's immediate needs.  I thought the move would be temporary. At the time, she needed little assistance, she mostly needed limited supervision.  She would occasionally forget to pay bills or go to scheduled doctor's appointments.  Even though Alzheimer's was Mom's greatest fear, I never considered that it would be her reality.

But, as each piece of independence was stripped from Mom, the reality became more obvious. She had several emergency hospital visits resulting from taking her medications repeatedly during the day.  She would get lost driving streets that she had driven for 40 years.  She lost her memory of friends and acquaintances that she had know for as many years.  But, the memories of her childhood were fresh.  I took her to many doctors looking for the answer that I had already diagnosed.  Finally, after a couple of years of asking the question, we were finally given the answer that was already known.

And, even then, I was ignorant of what this disease would do.  I never realized the sacrifices that it would ask of my children.  Or what it would demand of me.  I certainly never considered that it would take my Mom and leave an unrecognizable shell of who she was.  She was right to be fearful of this disease.  But, the biggest surprise was the toll it took on my relationship with my brothers.  My children and I will be the only thing that survives this hideous situation.  But, even we will be forever changed and scarred by evilness that is Alzheimer's. 

Disgusting alert...

Disgusting alert.  Seriously.

Each day that my babies were growing up, was always better than the day before.  And, for the most part, even though they are both teens now, it is still true. I've long compared this journey through Alzheimer's as a reverse childhood.  So, it only makes sense that each day is worse than the day before. 

And today was one more piece of evidence to prove it to be true. 

When I started Mom on diapers a few months ago, I knew that my gross level would be tested.  Being that I have a very low threshold for gross, I knew it wouldn't take much.  But, walking by her today and detecting an overwhelming aroma of poop, I had no idea how bad it could be.  You see, she had it head to toe.  It was all over her hands, in her hair, on her clothes, on her shoes.  It was everywhere but in her diaper.  So, that led to a disgusting question.   The answer was on the floor of her room in front of her closet.

So, Alzheimer's strikes again.  And, if today was horrible, what does tomorrow have in store?

Rally jammies...

I wrote the entry that-I-didn't-write on Friday.  At that point, Mom had been sleeping well for several days.  I didn't attribute that wonderfulness to the combination of supplements and the fact that my Fitbit was keeping track of my sleep.  I say didn't because I did not want to jinx the amazing sleep that we had been getting.

However, the joke was on me.  That very night, and the two nights since, Mom has been as restless and disruptive as ever.  Last night, while it wasn't horrible (horrible meaning that she is awake and mean) it was   the worst night in awhile.  While she woke up a lot, each time that she got up, I was able to get her back to bed fairly quietly.  She, however, would not stay there.

I finally gave up at about 3am, more from exhaustion than thinking she was down for the night.  Here is how my Fitbit saw the proceedings of the early morning:

Unfortunately, lying quietly (no movements) is considered sleeping by the monitor.  So, the period I spent lying in the dark waiting for Mom's next rising is considered sleep. 

I said in Friday's entry that I am not particularly superstitious.  But, if a baseball player turning his cap inside out and wearing it backwards helps him win a ball game?  I'm willing to give it a try with my pjs.  I shall call them Rally Jammies.  And, I shall get some sleep.  Knock wood. 

The woman in the mirror...

I hear Mom and her never-ending complaints and I just want to scream.  My brain knows, it knows, that she is sick, but I just cannot separate the sickness from a lifetime of complaining.  She was never happy.  I know that, as well.  But, the non-stop gripes and arguing and bitching, are wearing me out.

I grew up in a household where nothing was ever good enough. Everyone could do it better. No matter what I did, or felt, I was ridiculed and made to feel unworthy.  So, Mom's litany of complaints that start off that I haven't fed her in days, followed by nastiness that she never asked for the food that she is then served, followed by accusations that I am trying to starve her, are just too much.  And the many other complaints, are effecting me in ways that I can't seem to stop. They are reaffirming that feeling of worthlessness that I have spent a lifetime overcoming. 

Her dissatisfaction with everything I do is like a virus.  It is spreading to all parts of my life.  I have begun believing that I can do nothing right.  I look for the disappointment in the people around me.  And I see it every where.  And I know that I am seeing what isn't there but I see it nonetheless.  Again, I am a 13 year old girl unworthy of anything positive.  Again, I avoid the mirror because I don't like what I see. 

Pushing the button...

Writing this kind of a blog is like a balancing act for me.  There is a fine line between my writing about the intense feelings while dealing with an Alzheimer's patient and telling the cut and dried truth of the hideousness that is Alzheimer's.  Unless you've lived it, you have no concept of the range and depth of feelings that this disease puts you through. 

From the desperation you feel when your loved one, who is wasting away in front of your eyes, won't eat something as simple as a peanut butter and jelly sandwich... To the joy you feel when you've made it an entire afternoon without cursing at the person who used to be your mother... And back down into guilt because you didn't make through the evening and the words shock even yourself at their harshness.

For every entry I make here, there are dozens more left unwritten or unpublished.  Some are things that I don't want to remember.  More than a few are things that shame me.  And still others are simply things that are so personal for Mom that I can't share them.  

But, the most difficult part of the balancing act, is when my finger hits that publish button.  Have I gone too far?  Was I as honest as I could be?  Will I be pitied or simply understood?   Have I been fair to Mom?   

So, the balancing act continues.  And, if you are reading this, I've chosen to push that orange button one more time.   

Forgive me, Billy Joel...

It's 1 am on a Saturday,

The usual one shuffles in.

It's the old gal hanging over me,

wondering who I am and where she has been.

She says, “Hey, can you tell me a memory.

I'm not really sure how it goes.

But, it's sad and it's sweet

and I knew it complete when I wore a younger girl's clothes."

Give me your life, I have Alzheimer's.

Give me your whole life for free.

I'm in the mood to be be mean to you,

And you can do nothing for me.

Now, my kids are asleep across from me,

And the angry one just doesn't care.

She yells and she cries and she wants it all.

Until I just disappear.

She says, “I'm hungry, I'm full and you're killing me.”

As the illness haunts her lined face.

And I'm sure this all will soon finish me,

If I don't get away from this place.

Give me your life, I am Alzheimer's.

Give me your whole life for free.

I'm in the mood to be mean to you,

And you can do nothing to me.

Sleep...

I haven't written much lately.  While I'm not a very superstitious person, I tend to believe talking about something good, jinxes it.  So, I am not actually writing this entry.  But, if I planned to write an entry, this is what I might think about saying...

Mom has been sleeping moderately well... again, I am only thinking about saying that sentence.  I quit trying it the doctor's way.  The meds that he says will work for sleep... do.  They get her to sleep.  Unfortunately, they don't keep her asleep.  So, if I want her to take a short nap, the prescription medications do the trick.  If I want her to wake up agitated, aggressive and hallucinating at 2 or 3 in the morning, they also do the trick.  But, I would much prefer that she actually sleep the entire night.  I know.  I'm picky.

So, what have I tried instead?  Seemingly everything.  It's interesting that many products with the same active ingredients effect her differently. There is one product that helps her sleep in a generic pill from Target, that in a brand name product, simply agitates her for several hours.   So, it has been a couple months of trial and error. 

The 2 products that have helped the most are both natural supplement blends.  I haven't found any side-effects or potentially harmful interactions with her prescription medications.  And, this makes me happy.

But, and this is a huge but, what seems to have worked the best is my Fitbit.  I am now tracking the amount and the efficiency of my sleep.  I can honestly say that the four nights that I have tracked my own sleep, Mom has slept very well.  My sleep efficiency average is 98%.

So, while I am sure that those natural supplements have helped, and I will continue giving them to her, the non-superstitious part of me will continue wearing the Fitbit and sleeping very well.

But, I didn't say that.