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.

Another episode of random thoughts...

-Exhaustion is my new, old friend.  Nothing is keeping Mom asleep now.  All previous methods are useless.  I am considering an alternate form of therapy, that frankly, would have shocked the Hell out of me a few years ago. But, research (done during the light of day) tells me that it works and it helps.  So, I'm in.

-The exhaustion is making me more emotional than usual.  Sleeping 2 hours here, 90 minutes there, all with one ear on the alert is not conducive to good moods. I don't remember what it is to not be tired. 

-With all of the gadgets, furniture arrangements and special locks around here, the house feels like an obstacle course.  And now add the entire bathroom to the list of things that must be locked at all times.  Mom uses the toilet as a trash can.  As a result, I have been plunging the toilet more often than I ever want to plunge.  Yesterday, I plunged.  And plunged.  I'm still plunging.  At one point, I poured a bubbly concoction into the bowl and let it sit.  This is what floated up to the top (the Qtip is for size reference):

-Christmas is upon us and even though Mom sings with the carols, she has no comprehension that the Holy day is here.  She always made the day special for us and I'm trying to do the same for her.  The thief that is Alzheimer's will surely make that impossible.