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.

Be careful what you ask...

Each day on my Facebook page I ask a Fun Question of the Day.  In today's question I innocently asked if anyone believed in ghosts and whether they had any experiences with one.  People shared some truly interesting and, for me, startling experiences.  My own answer was that I believe that they exist but that I had never had any personal experiences.

That all changed tonight.  The house has settled.  Mom has been relatively quiet for a few hours.  The girls and pets are asleep.  I am lying on the couch having a little "me" time on the computer.  I have a small fan next to my head keeping me cool and drowning out the small sounds of the night.  The rest of the house is dark except for the low glow of the bathroom light.  The only light in the living room is the bright glare of my laptop.  Anyone who has used one in a dark room knows that there is a total blackout beyond the perimeter of the screen. 

As I am sitting there I think I hear the sound of change jingling in a pocket.  Or, possibly after the ghost stories that I read today, I am hearing chains rattling?  I talk myself out of it. There are probably some kids walking by and I hear them through the open window. Back to the glare of the laptop.  Wait, there it is again.  And it is getting closer.  I stop what I am doing and I listen.  All is quiet.  I tip the laptop towards the hall door to see if I am hearing Mom moving around.  Nope.  She's not there.  I am just a little rattled from the stories. My imagination is running wild.

Suddenly to my right there is a pale, glowing face bending down towards me!  An eerie, vacuous, unearthly face with empty eyes!  I scream as it gets closer to me.  Ok, scream is a mild description, I shriek!  My terror does nothing to slow it down.  As it moves well within the light of my laptop I realize that Mom looks very ghostlike in laptop light.  Her hands are jingling change in the pocket of her housecoat as she calmly says, "I've been asleep and I just wanted you to know that I won't be getting up anytime soon."

Note to self...

Note to self:  Run the dishwasher later in the evening.  Apparently it looks like an oven to Mom and she wants to constantly open it and "see what's cooking". 

Who you are...

Ok, today was not a "moment in time".  It was a freaking day in Hell.  My positive and loving enlightenment lasted until about 11:00 am.  It is now 11:48 pm and I am hearing quiet for the first time today.

The more days that I have like this, the more I believe that the behaviors of an Alzheimer's patient are like a drunk who blames his actions on alcohol.  When in reality, it isn't the alcohol at all, it is who they are without their inhibitions or filters.  All of these behaviors that I am now seeing in Mom were always there.  They are just running free with no filters.  She was an intelligent woman who knew that these  traits were not acceptable in most situations and that people did not want to be around an angry, unhappy person.  So, she filtered them, but they were still there. 

I have spoken to other caregivers who have few trying days.  For the most part, their family member is kind, sweet and docile throughout the progression of the disease.  But, it is my belief that these people were always that way.  I do not believe Alzheimer's changes who we truly are... but that it intensifies it and removes our ability to monitor our own actions.

If this is sounding like a harsh judgement on my mother, I don't mean it as such.  I love my mom and appreciate her many wonderful traits.  But, anyone who knew my mom before knows that she was angry and very unhappy.  If I have learned anything through this trying time it is how important it is to truly be kind to those you love.  Make it a habit.  Make it who you are.  Because at some point you might not have a choice.

A breaking heart...

I have been diligently trying to remain calm with Mom.  As I have stated before, I cannot even imagine how terrifying it must be to recognize no one in your life.  And she is at the point in her disease that she does not know who I am.  She recognizes me as someone who is familiar and caring, but that is as far as it goes.  She does not accept that I am her daughter.  In fact, most days she refuses to believe that she is old enough to have children.

And, for the most part, the patience has made a difference in our daily exchanges.  She is calmer and much more loving, as am I.  She still pushes the buttons that have been primed by a lifetime of her anger and disappointments.  But, for the most part, I do not respond. 

So, why is it breaking my heart?  Was my anger just a defense against feeling her pain?  Am I so shallow and selfish that it was easier to hurt than to be hurt?  Because listening to her brokenhearted questions about her family forgetting her is crushing.  And even knowing that she lives in another reality, it hurts when she talks about her daughter Nancy betraying her and neglecting her.  But the most devastating is listening to her cry herself to sleep every night while begging God for help. 

In her world...

I just read a blog written by a man who is an Alzheimer's caretaker for his mother.  He dealt with questions being repeated over and over until he became frustrated and angry.  His answer was to not just remember that his mother's short term memory was gone but to acknowledge that he couldn't change that fact.  Instead, he changed his response. 

He calls the life that you and I live the Real World and the life his mom lives the Alzheimer's World.  When speaking to his mom he literally takes a step to the left before responding.  This is his way of reminding himself to enter her Alzheimer's World.  By taking a physical step he is able to remember  that the Alzheimer's World is an actual, physical place where his mother lives.

Mom lives in Alzheimer's World.  Her short term memory is non-existent.  It truly breaks my heart watching Mom become frustrated that her parents are late picking her up.  Or that her family is waiting for her and she is heart broken that they are worried for her.  I cannot imagine how alone it must feel to know absolutely no one around you.  What a terrifying and isolating feeling to have.  When she repeatedly asks the day of the week, she is not doing it to irritate.  She is asking for confirmation that she is still in control of her mind. 

I am going to try to remember to enter Alzheimer's World when I am responding to Mom. I probably will forget to take the step to the left before entering.  But, I can make the effort.  And while making the effort, I can try to respond with more comfort in my voice.  Even though she probably does not understand a lot of the words that I am saying, she can understand the comfort and compassion that she can hear in my voice.  And I will pray she finds peace in her world.