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.