But Whenever Monday Comes

The nurse motioned to Mom and I to step outside after she had seen and heard all that she needed to.  When the door closed, she looked at us.  We knew what she was going to say.

“It won’t be too long now” she said.  Mom and I nodded.  We knew that, but to hear it from her made it a reality.  We knew that the minute the feeding tube came out.

But when Monday came and Grandma was still up, walking around, drinking whatever she could get her hands on, that’s what we didn’t expect.  On Tuesday and Wednesday she continued her routine to taking every dish out of the sink and putting it on the counter, shuffling over to the refrigerator to take out the milk, water, coffee, club soda, Vernor’s, and yogurt, and trying to take big gulps of whatever she could lift to her mouth.  Other things happened this week too.  For example:

  • Mother found Grandma’s pants in the fridge, and the water on the counter.
  • I came into the kitchen to find four glasses on her desk, one filled with milk and another with coffee.  She drank some milk, then tried to drink out of an empty glass.
  • She took a carton of coffee out of the garbage and put it into the refrigerator.
  • I took the top off of her bottle of club soda and she still tried to open it.  “I took the top off” I told her.  She didn’t look at me as she still continued to try to take the top off.  I pick up the top and showed her.  “I have the top.  The bottle is open.”  She still didn’t look at me, and continued.  “I have it right here” I kept telling her.  By this point, I got it, she was not comprehending what I was saying.  I put the top back on it.  She looked at me and smiled and said, “Thank you” (she can’t really speak, though).  And she took the top off and took a drink.

Thursday is where it really starts getting weird (like it’s not weird now, right?).  Holly, our hospice nurse, made her way over to the house.  She came in and sat down at the kitchen table as she had done before.  She listened to Mom and I list off all the information that I have just written about, and after gathering it all, she headed in to see Grandma.

Grandma was not pleased.  For some reason, she did not like Holly this time.  But that’s not the weird part, even though it is strange.

“I want to go home” Grandma said.  The three of us stared at her.  Grandma looked at us , probably wondering why.  “You are home” Mom said.  Grandma shook her head.  “I want to go home, and you won’t let me” she replied.  “Where’s home?” Mom asked.  Grandma didn’t answer.  “Where do you think you are?” I asked.  Grandma looked at me, then leaned over to look out of the kitchen window.  She pointed outside and told us the address.  It was this address.  Ok, so she knew where she was, but she didn’t know it was her house.  “Whose house do you think it is?” Holly asked.  Grandma pointed at Mom then at me, then back and forth.  Ok, so she knew where she was, but she knew the address to our house.

“Do you know who these people are?” Holly asked, pointing at us.  “They’re my sisters” she answered.  “That’s your daughter and your granddaughter” Holly told her.  Grandma shook her head.  “Do you know their names?”  Grandma shook her head again.  After Holly finished examining her she asked,  “Can I do anything for you?”  “I want you to leave” Grandma told her in a stern voice.  “You’re nosey, and you can go.”  Holly just nodded and said, “Ok.”  She stood up, said, “Good-bye” and walked out of the room.  I walked out with her.

“I’m so sorry” I said.  “I was not expecting her to be that mean.”  Holly smiled again and replied, “It’s ok, happens all the time.  I don’t take it personally.  I’ve been called worse.”  When we finished up, I walked her to the door and saw her out and went back into Grandma’s room.

“I want to go home” Grandma said again.  “You are home,” Mom replied, “this is your home.  You and Dad built this house.  This is the same house you’ve been living in for 20 years.  This is the same bedroom you’ve been sleeping in.”  Grandma looked around.  “Well, I don’t like it.”  “Do you want to go into another room?” Mom asked.  Grandma fiddled with the pillows on her bed, then looked back at Mom.  “I want to go home.”  “Where is home?” she asked.  Grandma shook her head.  “I’ll take you home.  You give me an address, and I’ll take you home.”  “You are such a liar” Grandma replied.

So Grandma knows the address of the house in which her captives, her sisters, are keeping her hostage.  Sound like a good book plot to you?  Well, don’t take it, I’ve already written half of the story in my head.  She often does ask, “Can I have a drink of water, please?” in a way that makes us think she has to ask us for permission to do what she has been doing for 85 years (or, 80.  At what age do you become independent?).  She really does act like we’re holding her hostage.  Maybe we treat her like that.  It’s not like we lock her door or yell at her when she drinks the milk directly out of the carton (if she can even lift it).  We do follow her when she gets up and walks around, but come on, she hasn’t eaten in a week and she doesn’t even swallow the liquids anymore (she mainly just puts it in her mouth then lets it spill all over the counter and floor when she spits it out.  That kitchen will need a good scrubbing once she…never mind).  She’s weak and looses her balance often.  Of course we’re going to loom over her.

She has been asking us lately, “Where’s your sister?” pertaining to myself and my mother.  She doesn’t even know that we’re mother and daughter.

All of this has an explanation: dementia.  One of my family members told me to not take anything she says personally.  Mom and I knew this was going to happen though.  We knew things were going to get to this point.  We had been warned, we did the research, we talked to people.  “Somewhere deep inside your grandma, she knows who you are.”  Yes, I’m sure of that family member, but not right now.

But Mother said something very true today.  “She told us enough that she loves us, and that she appreciates that we’re here, that all of this doesn’t matter.”  And it doesn’t.  We know this isn’t her.  This is the lack of food and water, and old age.  The only role that ALS has in this, is the fact that it had shut down Grandma’s throat earlier that it was supposed to.  If she didn’t have ALS, we wouldn’t be going through this…right now.  Maybe later in life, but all it did was speed up the progress (does that sound insensitive?).

But hey, look on the bright side.  At least I got a good plot out of all of this:

Captive knows address of house they’re being held at, but doesn’t leave.  Why?  Who are the captors?  And why aren’t they doing everything they have to, to make sure their hostage stays?

Stay tuned to find out those answers, and much more…

P.S. Happy Friday the 13th!

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