Thursday, March 8, 2018

The Octopus...

My experience as a caregiver ended almost 3 years ago, although it feels like yesterday. Yesterday, because I am still fighting my way out of the destruction. Alzheimer's disease does not care or give favor to anyone. If your family comes in contact with the disease, you become part of the destruction. I have come to think of it as an evil octopus, whom I call Al. Al tries to suck the life out of you. If you are quick enough to start your escape and begin to heal, there is another tentacle attaching itself to you.

There are eight arms on my metaphoric creature:  Faith, Finance, Self worth, Guilt, Anger, Relationships, Health, and Exhaustion. Each one is powerful by itself, but are more effective when they attack the victim in unison, or in pairs. A few are strike and go types of fighters. My faith was attacked, but is strong. My wounds caused by my guilt have mostly healed. Anger has left some healthy scar tissue of acceptance. I've accepted that the relationship that I lost will remain that way.

That leaves a battle with the remaining four- finance, health, self worth and exhaustion. It is so difficult to move ahead when I can't financially provide for my family, when my daughter is supporting us because I can't find a job. That, in turn, leads to a feeling of uselessness. My health is suffering. And here comes exhaustion. That damned Al just leaked all over me with his hidden power and it feels so dark.

I am just so tired of it all. I'm tired of pretending its all okay.

Am I being dramatic? Probably. But, I'm also being realistic. I don't want pity. This is just a continuation of the journey and I need to continue until the story is complete.

Al sucks.

Sunday, September 17, 2017

In the trenches...

When I take Mom out, we tend to go to the same places... over and over.  The ladies at McDonald's know that Mom always begs for cookies.  The man at Walmart always nods at us.  Crystal at Burger King knows when Mom is having a bad day.  The repetition is good for Mom and it's easier to deal with Mom's meltdowns in these places.

Today we went to Target and had a "new" clerk check us out.  I say new because she didn't know us.  Mom did her usual varied routine.  Today she was angry with the woman for taking something that belonged to her.  I said my normal, "I'm sorry, she has Alzheimer's."  She smiled and said that she recognized the signs.  I told her that I was sorry that she did because that meant that she has dealt with it.  She said, "Dealing with it. My grandparents and mother."  She said, "But, your mom is still able to get out.  And it's 3 o'clock in the afternoon and you're still nice to her."  She got it!  She wasn't looking down her nose, knowing how to do it better.  She has been in the trenches and knows that despite our best intentions, we do lose our patience.

She made my day.


I am awake...

It's 3 am. I am awake.  I lie here in the dark with only the faintly glowing doorway into the hall showing the way.  20 years of being a mom has trained me to hear the slightest possibility of a noise.  But, I hear nothing but the clock ticking, the dog scratching from her bed, and the deep breathing of my sleeping children.  I am awake.  Waiting.

And there it is.

In the glow of the hall light I see it.  A thin, dark, spindly form.  Staggering, no, waddling?  It throws its weight side to side, almost like a duck.  One step towards the right.  One step towards the left.  Pause.  It's considering where it wants to strike.  It hears me.  It senses my being.  It moves towards me.  One step towards the right.  One step towards the left.  Pause.  It stares right at me.  I hold my breath.  It slowly raises a spindly hand towards me, straightens its too thin body, whirls around and quickly retreats to its den.

As I release my breath, I realize that had I not awakened, I would have missed the quiet approach of the intruder.  But, I was awake and I saw it all.

There will be little sleep tonight as I know that it is aware of me.  It is a matter of time before it returns.

I am awake. 



The holidays are over. The times that families seem to most miss their loved ones who have passed. It's hard to enjoy the many celebrations when there are empty chairs that will never be filled. I have been though many of those holidays.

This year was not one of them. For the first time in a decade, my children and I were able to have special times that were focused on something other than anger and frustrations. That's not true. There were periods of time in the past few years that weren't filled with stress. But, the times were those moments in time I like to bring up every now and again. 

I know there are people who grieve my mother's passing.  I understand and offer my condolences and prayers of comfort. 

I am not grieving. I am rejoicing. I will say it clearly and without shame, I am glad my mother died. I feel as if the world stopped sitting on my shoulders and crapping on me. Sorry, if that is too graphic, but it is true. That's the selfish part and I'm more than okay with that. 

But what makes it easy to be glad is to know that my mother has no more pain. She is no longer struggling with a brain that betrayed her. I was told over and over again during this journey that my mother was in there, that deep down she knew me and she knew what was happening. That though horrifies me. 

For the first time since Mom passed I realized that I don't remember her with anger and resentment. And that is the best gift of all.


And just that fast...

Mom has been up for 18 non-stop, agitated hours.  She just walked out into the living room and asked me, "Can I sit out here with you?"  I didn't answer because, to be honest, I have no answers left today.  I'm drained beyond words.  She responded with, "Aren't you going to talk to me?  Nevermind, I feel like I've taken everything from you today."  

She was there.  My mother was there for the time that it took her to say those words.  As she turned around to leave the room she said, "I haven't eaten in 3 days."  And just that fast, she was gone again.


Saturday, September 16, 2017

Tick tock...

Some days the clock ticks by so very slowly.
Peeking out the window.
They should have been here.
Where are they?
She's driving me crazy.
Where is the van?
Is that them?
The dog isn't barking.
It's not them.
They're late!
They're here!
Let's go, Mom!
Thank you for coming!

Some days the clock clicks so very quickly.
Don't let her be here yet.
Is that her?
Is she here already?
Don't be here yet. 
Just a little while longer.
Not yet.
It's too soon.
The dog is going crazy.
They're early!
She's here.

And the clock slows. Again.


X marks the spot...

Yesterday, I had to deposit a check that was made out to Mom.  Legally, I can sign it but I try to include her in the simple aspects of managing her life.  So, I turned to her with a pen and the check and asked her to endorse the back.  I made an X at the appropriate spot and asked her to sign it.  She stared and then printed an F... which is not part of her name.  I explained that she needed to sign her name "Andrea" at the X.  She nodded her head that she understood, then printed in very shaky capital letters A D D R E S S.  I told her that it looked good and then signed for her.

It surprised me.  She was able to do that less than a month ago.

She always played games with the letters and numbers on license plates. She would make words with the letters and poker hands with the numbers.  She still tries... but the logic isn't there anymore.

This disease has moved so slowly for Mom that we seem to notice each thing as it is stolen from her.  I can't help but wish that her journey could go faster. But that would be kindness. That isn't a word normally associated with Alzheimer's.