Mom's Birthday - happy bday!

 

Happy Birthday Mom!

Since the day we found out you had Vascular Dementia, our lives have forever changed, but our love for you has only grown stronger.

Enjoy your day - I know you will! 

Oh just another day or days

It began Sunday, and not until 8pm last night did I finally feel a sense of temporary relief.

Mom began another episode on Sunday morning and would not stop pacing, constantly misplacing things, and looking for things that did not exist.  She would not stop asking me the same questions, and I could not catch a break.  I already know by now that there is NOTHING I can do to calm her because although I knew that, I still tried and again...nothing worked so I decided to stop wasting my energy and just went about my day with mom asking me random questions over and over again, and me trying to find an answer that would satisfy her.

Cell phone, out of purse.
TV remote into purse.
Glass of water from kitchen
pacing
No nap
Cell phone, back in purse.
pacing
Picture frames into purse.
Another glass of water from kitchen.
pacing

Repeat....
non-stop repetition.

No sleep - in bed by 1 am, gets up at 2 am, 3 am, and 5 am

Monday morning - I'm exhausted, but the provider is here so I don't deal with mom.  I leave the house and have breakfast then home by 1pm to relieve the provider.

SAME actions, still no nap.  At least mom has eaten quite a bit - whatever I serve her and everything on her plate, so no major complaints.

8 pm comes along, and something I said triggered mom, I ask her to get into bed and she does, and I sit by her side, say prayers with her eyes closed, and she falls asleep.

Today, Tuesday - Mom exhausted as expected, but still gave provider instructions to get her up early for breakfast, shower and yoga - she took a nap and was waken up to have lunch and play Chalupa.

I on the other hand am enjoying my day on the sofa watching movies.

Et al

This was hard for me, but it has to be said

Mom, a few hours before her episode

Mom says "Why do you do these things, Evana"

And I already know what kind of day we're going to have.  You all reading this have no idea where I'm going and what I'm talking about and can't even begin to imagine the impossible ways I will fail to explain what this feels like, but I will try anyway.  I want people to know how it is to live with someone with a declining disorder and brain disease such as Dementia and Alzheimer's.  It's not a disease of "forgetfulness" or "memory loss" although those symptoms are predominant, it still reaches a much deeper level than "Where did I leave my purse"?

Mom says "Why do you do these things, Evana"
And to be honest, I don't even want to deal with her.  I don't want to answer her because my answer is nothing to her, it means nothing, she probably hears nothing and she will continue to glare at me with a wicked facial expression until her episode passes.

I want to close the door on my mother, I want to shut her out, I want to scream, or tell her to leave me alone.  But what I need to do is remain calm and try hard to change her train of thought, but instead I want to hear her say those words...as much as they hurt and anger me, I want to hear what I know she is about to say so I ask..."Do what things"

KILL PEOPLE she says.  Why do you want to murder me and leave me in a ditch, she asks.

Me:  I don't
Mom:  Yes you do, I know what you're planning
Me: I'm planning to make us lunch and maybe watch a movie
Mom: No you're not; you want to kill and murder me
Me: Mom, no I don't...you don't know what you're saying, I'm just here trying to relax and read a book
Mom:  That's funny, I know what you're up to with your son, you want to kill me.  I can't believe you do these things.

At this point of the conversation there is NOTHING absolutely nothing I can do to tell my mother that I do not want to kill her and that she is safe. This is her reality and I can't explain it, in fact...a lot of people can't explain it including doctor's - not sure they want to understand it, but they do want to medicate her as a solution.  This disease is far beyond being medicated; there is no cure.

My day can go from moderately calm to complete hell and confusion from one moment to another depending on my mother who has no control and whom I, also have no control no matter what I do.

I can sit and sing lulabyes, read a story to her, play a game with her, take her for a walk, give her some chocolate to distract her, plead with her that she is having an "episode" and it's a part of her sickness, but she probably doesn't even know she is "sick" and when she hears me say anything about her being "sick" or needing taken care of - she might spiral even further into that unknown world where her mind sometimes lives.

When mom has these episodes, I have always tried my hardest to respond without hurting her feelings, but a lightbulb went off the other day during one of her episodes...I try hard to say the right things, and think of her emotions when all the while...she is emotionLESS, so nothing I say or do will ever comfort her - she is stoic, like brick.  No emotions, just a fake fake episode, but to her VERY real.  This isn't reality, but to her it is and she has no real life emotions during these times - but I DO.  So when things like this happen, her episodes...I have to think of myself...become emotionLESS just like her - become like brick.  I have to take her by the arm, sit her on her bed, give her a glass of water, put music on and say "Time for a nap", leave her room, then go back to my space and recollect in my own way.  During her episodes, I have to pretend I'm a nurse or doctor, I have to look at her with a stern stare and say...come over here Emma, sit and relax and end it there without reacting emotionally.

She is my mom - me detaching myself from her horrible episodes is tough because everything our mom's say to us affects us...sick, diseased, healthy, loving, hateful...does not matter - they are our moms and everything that comes from their mouths does affect us.  It makes my mind feel like an empty chasm of nothingness.

This is a day in the life of a full time caregiver taking care of her mom.  I will not let a disease get the best of me.