Once a woman...

Well, ok!  Here I am, back to where I was 9 or 10 years ago. .. Putting those annoying covers on door handles,  straps through gate latches, covering the handles on the stove.  It is a humbling feeling to know that I have to "lock" my mother in her own home to keep her safe from herself.


 
I'm paraphrasing a quote a friend shared with me when he found out I was being the caretaker to my mom, "Once a woman, twice a child".  

 

How do I...

How do I answer questions that have no answers?

How do I calm fears that aren't rational?

How do I get someone to trust me who doesn't know who I am?

How do I calm someone who can't accept comfort?

How do I bring peace to a mind that is slipping deeper into turmoil?

How do I keep her safe when she is her own danger?

How do I take away the fear of something that happened 70 years ago?

How do I separate myself from the anger that is bombarding me?

How do I help someone whose reality is not real?

How do I accept that this is my reality?

A lost soul...

It's almost 2 am and I have to be up in 4 hours.  Yet, here I am creating an entry for my blog.   But, I have to keep busy.  You see Mom is wandering and sleep will be a long time coming.  For both of us.

Let me start at the beginning.  I started sleeping in the living room because it is there that I will have the best chance of keeping her safe.  She has to go by me to get anywhere that she becomes a danger to herself.  She has wandered before but never this late and never after she has been asleep.  I've been expecting this new symptom, but not with any amount of excitement.  It is actually very quiet, almost stealthlike.

Back to the wandering...  I was asleep and heard a very quiet movement in the dining room.   So, I woke up and watched Mom pace from kitchen to dining room, to front door, to bathroom and back around again.  She was fully dressed and ready to start her day.  I stayed quiet and just watched for over an hour.  She didn't attempt to leave, but I am sure that is coming. After awhile she realized that I was awake and treated me to a play by play of her actions.  "I am going to the kitchen to get a drink of water. I am sitting at the table and looking outside.  I am drinking my water now.  I am driving my daughter crazy now (okay that one was mine) "

So, what causes this?  I'm guessing she is searching for something familiar.  She is looking for the home that is buried in her mis-firing brain. She wants to find her family.   She wants to find that time when things made sense.  She has no true concept of time anymore, so, 2 am feels like noon, feels like dinnertime.  I wish I could reach into her brain and soothe it.  Until I find a way to do that I will lie here on this uncomforable couch and listen for the quiet sounds of a lost soul.  And I will blog at 2 am.

Perspective...

This last weekend I spent more time at the ER with my oldest daughter than I ever want to spend there again.  Without explaining  her medical history for the entire world to read, I will just say that she was there for a serious issue and was experiencing severe pain. 

While we were there my 2 brothers were forced to stay with our Mom and be her caretakers for 6 hours.  The situation had some interesting results...

First, both of my brothers were forced to see what my family lives on a daily basis.  And, remarkably, they finally understood   They got it.  They understood how bad it has become.  They are now considering solutions.  That in itself is amazing.

Second,  the time that I focused on my daughter was a bittersweet respite from our everyday life.  Once the medicines that she was given were allowed to start to work, she and I had a very peaceful evening.  I wasn't on edge, listening for every sound from the nest room, waiting to defend, protect, cajole or pacify at a moment's notice. And she received undivided attention from me, attention that she hasn't had  in years... attention that every child deserves.  In a warped way, it was any enjoyable evening.

So, what was a truly horrible time, ended up with some positive results.  Perspective is a remarkable gift.

Words of comfort...

Each night as Mom unwinds for the day she says her prayers.  Loudly.  Most nights the pain of her pleas is heartbreaking to hear.  Sometimes, like tonight, they are bittersweet.  She prays the way we all should pray.  She talks with Him and listens for the answers.  And, by her responses,  she sometimes gets them. 

The other night I sat in the chair beside her bed and felt like I was listening to one side of a phone call between two old friends.  Mom chatted with Him.  She listened and responded to His answers.  Occasionally, she would laugh at something funny He said.  And some of the discussion was about me.  Several times I heard responses like, "I know! That's what I told her! But, shhhh, she's sitting right here." and then laughter.

I believe that He is talking to her and comforting her.  I wonder why she isn't able to hear Him every night.  Maybe she is still in our world enough that she doesn't allow herself to hear His answer.  How many times have I prayed and been so busy talking that I can't  hear His words.

But, there is one thing that I do know.  My faith is being tested now more than ever before.  And His conversations with Mom comfort her and me. 

No left turn...

Recently, I wrote about taking a physical step to the left to remind myself to step into my mother's world.  For me, it was also a reminder to make the effort to find patience for her and her illness.  Today, I am finding all kinds of things to my right... but the other direction?  There is nothing left.

The destruction of a family...

The effects of caring for a terminally ill family member can be devastating to any family.  You truly discover the weak links in what was an otherwise strong unit.  My family remained strong after the early deaths of two brothers and the horrific cancer death of my father.  I was proud of them all while settling my grandfather's estate... there was no greed or hard feelings about any of his possessions as they were given to those who wanted them.

But, this.  This heinous disease that has taken so much from my mother has also taken my once strong family.  The hard feelings and anger at my remaining brothers' inconsistent and often non-existent offers of help are hard to be forgiven, but will be.  It will be much harder to forgive the fact that they have been a part of my family but I am no longer a part of theirs.

A few years ago my oldest nephew was married.  I was originally invited to the ceremony but was uninvited because they were afraid that I would bring Mom.  I was not even offered the option of attending without Mom.   Today was my other nephew's wedding.  I was told of the ceremony, shown the invitation and had the details of the upcoming nuptials described in detail.  But, I wasn't  considered worthy of an invitation. I actually feel better about this one because I wasn't given some insulting reason for the omission.  It is truly ironic that I feel like the hired help, yet, at the same time I am not being paid and being forced into bankruptcy.

It is both heart-wrenching and freeing to realize that you are not an important part of the family which you have always cherished.  I would like to walk away from the entire situation and tell them both to suck eggs.  But, those times when their schedules allow a few hours to be a son to their mother and a brother to me are the only breaks that I get.  I feel like a hypocrite each time that I smile and say the right words when they share the stories of their families' happy moments.

I truly wish my nephews and my brothers much happiness. I only dream that they could wish the same for my daughters' and mine.