I didnt like Burger King anyway...

I am so upset and my thoughts are so jumbled that I don't know exactly how to put them into words.  I will do what I tell my kids to do... I will just start at the beginning and work my way through.

There was a power outage this morning for a few hours.  Our phones were almost dead, so we decided to go get a quick lunch and charge them in the car.  We went to Burger King because it's cheap and Mom is pretty relaxed there.  We ordered and chatted with the lady (Krystal) behind the counter who has befriended us.  Everything was going well, Mom had already tried to hit on the man behind us in line, so it was business as usual. But, as we walked away, scratch that... As Katie and I walked away, Mom leaned over to Krystal  and loudly said, "Don't make me go with her, she'll hurt me if you do."  From there it only got worse. 

Mom refused to move from the counter and effectively stopped the store in her tracks.  No one could order.  Every one stared.  Mom yelled that she wouldn't move because "she" (me) would kill her.  It took some coaxing, but Krystal came from behind the counter and finally got Mom to move further into the dining room.  But, that was as good as it was going to get.  She wouldn't let anyone help her and she would yell if I came within 15 feet of her.  She told anyone who would listen that I was going to hurt her, kill her, slit her throat, murder her, etc.  I was so embarrassed, frustrated and hurt. I was embarrassed because people were staring and talking. If you know me, I don't like being the center of attention.  Frustrated because it is my job to take care of her, to prevent these types of outbursts and to calm her if they occur anyway.  And I was hurt because, as irrational as it is, it was still my own mother accusing me of horrific things... in front of people who have no way of knowing the truth.

After a good seven or eight minutes of screaming and yanking herself away from anyone who offered to help, (yes, people offered, one lady stepped in and tried to help mom to her own table to join her for lunch) Katie was able to talk Mom into sitting down only by promising that she wouldn't let me join them.  I was left standing in the front of the store sobbing.  A big, rough looking man stepped forward, rubbed my arm and said, "Don't worry about it, we all have parents."  The lady who had offered Mom her own lunch, came and gave me a big hug and pulled a chair out and let me sit with her family so that I could watch Katie and Mom from a distance.  She offered me lunch and something to drink and just chatted like we were old friends until I was able to calm myself.  Various people offered sympathetic smiles or a hand on my shoulder as they passed by to their tables.  Krystal promised to pray for us. 

I could see that Mom was eating and Katie was getting frustrated, so I joined them.  Mom's focus had moved away from me being the one that would hurt her.  But, she was still paranoid.  We were told to watch for "her" or "that guy that is going to kill her". 

We finally made it to the car, where Mom promptly laid down to hide from "him".  The entire trip home she asked me to look behind the care and see of  "she" was still after her. 

As we sit here safely at home, I am trying to focus on the kindness of the many strangers who stepped forward to help.  Mom is dozing on the couch with no memory of her outburst.  And, I realize that is the only mercy of Alzheimer's.

Oh the irony...

You know how your hair always does what it is supposed to do on the day that you're getting it cut off?  It's like it knows that you're fed up and chopping it off.  Yeah, that's kind of like Mom today.  We have an appointment with the Neurologist in a couple of hours.  He's the one who adjusts her behavioral medications.  Guess what?  Her behavior is great today and that's without meds!  Why do I feel like there are rules to this game that Mom knows and I don't?

Goodnight...

Mom:  I'm going to say goodnight.
Me:  Okay.  Goodnight.
Mom:  I'M suppose to say it!
Me:  Okay.  Sorry.  I didn't say it.
Mom:  Thank you.  Goodnight.
Me:  Goodnight
Mom:  I'M saying it, not you!
Me:  Sorry.
Mom:  Goodnight.
Me:
Mom:  You can't even be polite and respond when I speak to you!

I seriously don't make this stuff up.

Change is good...

While I was getting Mom ready for her shower this morning, I asked her to take off her shoes.  First shoe comes off, a quarter and penny go rolling across the floor.  Second shoe comes off, another penny pings on the linoleum.  She stands up and takes her pants off, another quarter.  Gotta wonder what she is doing in her spare time.  So we're up to 52 cents.  By the time she stepped into the shower, there were 2 quarters and 5 pennies on the floor.  She showered and as she stepped out, I kid you not, another quarter drops from somewhere (do NOT make me think about where) onto the floor. 

I know you're thinking that this is kind of weird (and a little gross).  I'm thinking I made 80 cents. 

Sand castles...

Today was a bad day... more bad news in an already overwhelmingly bad time. As I sit here thinking, sinking into my melancholy, my mind's eye keeps seeing flashes of the ocean as it pounds the shore. I see a rather simple sand castle. There is a woman scrambling to finish the structure before the sea steals it all. The castle is humble. I feel the joy she is feeling in her work. As the tide finally starts to recede, I see her straighten and stretch her tired muscles, tears slowly slipping down her cheeks. She looks at me and I feel her struggle... the struggle of knowing that her castle is safe for today but if she wants it to stand tomorrow, she must return and fight the fight again. All the while knowing that the ocean is merciless and it will take it all. The sea will win. The sea always wins. And she will wonder why she fought at all. 

Things you never want to hear...

Mom just walked into the room and said, "It's cold in here.  Do you know where the matches are?"

Cutting off my nose to spite my face...

So, my brother won't be watching our mom on graduation night.  No, he didn't back out.  We did.  Turns out that my oldest daughter was as uncomfortable as I was about accepting the "favor" from him.  Ironic that watching his mother is a favor to us, but anyway...

Everything about it made me uncomfortable.

- If we had let him do it I would feel like I owed him a thank you.  I don't see or hear either of my brothers thanking me.  It is assumed that since I volunteered that I somehow have given up any expectations of gratitude.*  One of them once said that since I volunteered that I deserve what I get.  Yeah, no gratitude there.  So, I am petty enough that offering my thanks for a couple of hours of help is not going to happen. 

- I would have to speak to him.  I don't want to do that.  He cut us out of his life.  He is not going to be welcomed into ours because of this.  This time is for my youngest and I don't want to ruin it by adding the stress of dealing with him to her special day.  I want to focus on the joy, not the jerk. 

-He is not welcome in this house.  And he made it clear that he would not take Mom into his.  He was angry the last time he watched her here because we don't have cable. Apparently, he missed a big game.  Can you imagine the trauma of such a loss?  Such a sacrifice he made.  Yeah, cable was the first thing to go when I left my job to do this.  He's lucky we had electricity for him to read by. 

-I am so angry and disappointed with him that I could spit.  I put up with a lot from people.  I tend to forgive very easily, but once I'm done, I am done.  Accepting his help at this point would be more stress than I can handle and would make me feel like a hypocrite.
 
So, my oldest daughter will miss her sister's graduation so that she can watch her grandmother.  That makes me sad.  There is so little that we are able to do as a family.  But, it is a solution that I can live with for now.  


*After reading this through I need to clarify... I don't need or expect gratitude.  That is not why I'm here.  It is simply that I would appreciate it if he could recognize that my family has made huge sacrifices for this situation.  Whether I volunteered or not, we are here in the trenches everyday which gives him the luxury of ignoring the entire situation. 

This is how we roll...

This will be the fourth time in a year that I need to go to the dollar store and get one of those toilet paper spring loaded thingies.  Apparently, Mom has a collection started.

Pretty soon, we'll be the only ones in the neighborhood who lock up our toilet paper and our tooth-brushes.  Jealous, aren't you? 

 

Making the cut...

I have to be honest, each time a Facebook friend posts a quote about negativity or a status about cleaning up their list of friends and removing the negativity, I am surprised that I made the cut.  I feel as if all I do is complain and dwell on everything negative.

Each day I try to pull myself up and find a small portion of my sanity and my optimism. So many times, I say nothing rather than gripe or complain. But, I can only hold it in so long before I burst and the negativity comes spewing out of my mouth like a possessed woman with Tourette Syndrome.

As I sit here typing, feet up, Mom is sitting across from me. Each time she sees my feet move she yells, “OUCH! ” She then complains that I am hurting her... each and every time that I move. The problem is that we are on two separate couches and I am eight feet away from touching her. This is typical. I am wrong more often than I'm not. And that wears on me.

Then it hits me, I need to complain.  It is the way that I relieve stress.  This is not a normal situation where happiness is a choice.  This, with all of its anger and frustration, is my reality.

I will continue griping and moaning.  And I will continue sharing the positives when they happen.  But, if I don't make the next cut?  I understand.  I truly do.  Just don't be surprised if I blog about it. 

I want my mommy mood...

I'm having a really bad evening.  One of my medications is really kicking me in the butt.  I'm not feeling well, I'm not sleeping, and last night, neither did Mom.  I finally have a doctor's appointment next week.  Hopefully, they can help me and adjust the meds.  But, today I just want to crawl into bed and pull the blankets over my head.  Well, not really, that freaks me out, but you get the idea. 

Anyway, Mom stepped off the day care van in an extreme I-need-my-mommy mood.  Guess who she thinks is Mommy?  At least until I tell her to do something.  Then she somehow remembers that I'm not.  Unfortunately, an I-need-my-mommy mood requires a lot of patience.  I want to have patience, I really do, but it just isn't happening.  Each time I lose my patience (which has been non-stop) I feel my head just about ready to burst. 

What's one more breakdown, right? 

Be over soon...

“People think it's just forgetting your keys, she says. Or the words for things. But there are the personality changes. The mood swings. The hostility and even violence. Even from the gentlest person in the world. You lose the person you love. And you are left with the shell... And you are expected to go on loving them even when they are no longer there. You are supposed to be loyal. It’s not that other people expect it. It’s that you expect it of yourself. And you long for it to be over soon.”
― Alice LaPlante, Turn of Mind

So much in this quote is honest.  Honest because Alzheimer's is so much more that forgetting keys and names.  Yet it is deceptive in the fact that longing for it to be over doesn't sound that bad.  But, knowing that there is no cure, the reality is that the only way for it to be over means that you are wishing for your loved one to die.

I love my mother.  Sometimes I forget that  because this hideous disease hides her from me.  It hides her behind the "personality changes... mood swings... hostility... violence... "  But, I do love her.  However, this quote speaks a truth that I only whisper to people who understand.  I want it to end.  Soon.  I rarely say the words out loud.   They are said quietly because to want my mother to die is a feeling that isn't easy to admit.  But, it is nonetheless true.

Mom's body is very healthy for a woman who is almost 80.  She has no major health issues.  That is a blessing and a curse.  I am thankful that we aren't dealing with Diabetes, or Parkinson's, heart disease or any number of other ailments.  But, the reality is that because of that good health, we will probably go through every disgusting step of Alzheimer's.  So far, the disease has taken its toll on us in a mental sense.  The anger, frustration and resentment of the situation have all been at the forefront.  Soon, the physical side of the disease will show itself.  Eventually, she won't be able to walk, to talk, to swallow, to breathe.  So, yes, I want my mother to die.  I want her to die with as little physical pain as possible.  I want her to die with what remaining dignity this thief has left her. 

And, selfishly, I want to get back to my life.  I want my youngest daughter to have a sleepover.  I want my oldest to put her needs first and make choices that every 19 year old should be allowed to make instead of always making the choices that make my life easier.  I want to be able to celebrate the milestones in my children's lives without worrying about upsetting my mother.  I want to laugh in my own home without making someone angry.  I want to pay my bills on time, heck, I just want to be able to pay them.  I want to start remembering my mother before the disease made me hate her.  I want to start healing.  And I want it to be over before the stress of it kills me. 

Sleep is gooood...

Last night, Mom stood up and said, "I don't feel well.  I'm going to bed."   There's nothing amazing about that.  She says it dozens of times most every night.  What made this time noteworthy is the fact that she said it twice and then went to bed.  And stayed there.   We didn't hear a peep from her until about 5:20 this morning when she came out and loudly said, "Is anyone awake?"  Louder, "Is anyone awake?!"  Finally, "I am lonely and you should wake up and keep me company!"  Needless to say, we didn't.  She went back to bed and stayed there until 7:00.

What a gift.  I slept for 6 uninterrupted hours.  7 would have been great.  8 would have been amazing.  But, 6 it was and I am so very grateful. 

I miss being a wallflower...

Mom is sitting relatively quietly while I play a find-the-object game. Each time I find one, the game plays a totally random tone... Mom is singing along with the tones. So cute. When I finish a round, she says, "Why did you stop the song? I was singing with that!"

That was my Facebook status a mere 3 hours ago.  Within minutes of posting that fun, few minutes with Mom, the situation deteriorated... quickly.  "They" told her that I was going to kill her if I didn't let her leave.  I did my best to calm her but I just wasn't the person that she wanted to be trusting.  It got to the point that I just sat working on my laptop with earphones on, just so that I wouldn't lose my patience.  She became very angry and agitated.  She began grabbing at me.  She pulled so tightly on the sleeve of my hoodie that I figured it would be easier to just slide it off then to fight it out of her furiously clenched fist.  Yeah, next thing I knew I was standing in my jeans... no hoodie or shirt.

This journey seems to be a horribly choreographed dance... 2 steps forward, 3 to the side and 7 back.  There is no rhythm to it.  I just wish the song would end so that I could sit down and rest.  

Now that was funny...

Warning:  Some gross stuff in this one.

For tonight's entertainment we had a not so funny occurrence that was hilarious.

Mom came running out of the bathroom yelling, "Hurry!  It's broken!  Hurry!"  My oldest daughter ran in there and screams, "Oh, no!  Get out!"  I see her cringe as she looks at her grandmother and yells, "NO!  Don't get out!"  So, Mom tries to go back in and my darling daughter yells, "NO! Just don't move!"

Apparently, Mom had an accident and had "soil" all over her hands, hence the not letting her go out of the bathroom.  But, while she was trying to wash up, she somehow plugged the sink and let the water overflow.  My daughter walked into a room with an inch of water on the floor and a grandmother with "soil" all over herself.

As I went in and started mopping up the floor, my daughter is telling Mom, "Don't touch that!  No!  Don't touch that either!  Ewww!  Don't touch your face!  Mom! She's touching her face!" 

Washing towels:  About a $1.00
Showering Mom again:  Maybe 75 cents
Watching my daughter deal with it:  Definitely Priceless

For the win...

Around here, some days go into the win column simply because we survived them.  Today is one of those days. Or it will be when it is finally over.  I hope I'm not being too optimistic. 

Operator...

Mom went to bed a couple of hours ago and had been resting without any medicinal help.  As the rest of us sat in the dark on our various electronics, Mom burst into the room (scaring a scream out of me) and yells, "Where is it?  I can't find the phone!".  She's feeling around in the dark looking for it.  I get up and quietly coax her into the bathroom and give her a supplement to help her sleep.  She swallowed the pills with a drink of water.  She then put the cup to her chin and said, "Hello? Ma'am?  Operator, are you there?"  She looked at me and said, "She must have hung up." 

And I didn't even hear it ring!

Thank you, Sargeant Rivera...

Well, Operation Be A Kinder, Gentler Caregiver has been going for awhile now.  Overall, I'd give my self a solid B.  I've relaxed a lot and continue to try and see her as the victim.  She hasn't changed and I didn't expect her to.  She's still agitated and angry much of the time.  When I was in the Army I had a supervisor that gave some good advice.  He told us that when something hurts us or makes us angry that we should think of it like a hot ember landing on our arm and we should "just brush it off" before it burns us too severely.

So, after a week of non-stop brushing, I lost it.  I fixed Mom a plate of dinner... the exact same thing that we were all having.  It was so hot today that we sat outside on the front porch to eat.  As I sat down, she looked at my plate, that looked exactly like her plate, and she said, "Why is yours always bigger and better than mine?"  And I lost it.  I took my plate of food and scraped it onto hers and said, "There!  Now yours is bigger and better!" 

And she ate my dinner.