Not a hero...

A very dear friend and I have had a couple of discussions about the word "hero".  She doesn't understand how I can reject the word when people use it to describe me in this journey through Alzheimer's.

I have thought long and hard about this and how to explain to her why I reject something that she sees in this situation. The truth is, I reject all labels that cast me in a positive light for simply doing something that has to be done. Doing the right thing when there is no other choice... is not heroic.  Doing that right thing and resenting every moment of it... is not heroic.  I am here because there is no other choice.  And I do resent every moment of it.

I keep returning to a short conversation that I had with my mom many years ago.  Mom had done something very kind for someone.  I no longer remember who she was helping or even what she had done.  But, I do remember telling my mom that I thought that she was a very nice person.  She shook her head and said that she wasn't nice at all.  So, I asked her how she could do something so kind and not think that she was a nice person.  Her response was, "Because I know what I was thinking when I did it and it wasn't nice." 

For her, thoughts and intentions mattered more than the action. And that is the best way I can think of to explain my feelings... my thoughts are very clear while caring for my mother.  And I know they are not worthy of the label of hero. 

My friend understands that the word "hero" (or any of those positive labels) does not give me a feeling of support.  On the contrary, it reminds me of how unworthy I am to be the one caring for my mom.  But, I will take that thought one step further.  While the word "hero" does not support me, the thought and feeling coming from the people saying it does.  I reject the label, I do not reject the intention. 

I can be quiet...

"SOMEBODY HELP ME!  PLEASE, OH, PLEASE!  HELP ME!"

This is something we all want to be woken by at 2:00 a.m.  At least, I do. Okay, I really don't.  But, awake I was.  I ran to Mom's room to find her on all fours, panicking.   She hadn't fallen.  She said she was looking for something and then couldn't see where she was.  So, I got her up and back to bed.  She fell right back to sleep.  I took just a little longer, but did get there.

"HELP ME!  I NEED HELP!" 

It was 4:30 and I found her on the ground again.  This time I stayed with her because she seemed a little dizzy and 2 screams from the floor in one night isn't a good thing.  So there I sat.  I was feeling brave and patient, so, no Pandora.  Just me and Mom's ramblings.  It was truly fascinating to listen to.  And kind of funny.

Here's a short excerpt:

"I don't feel right.  It's late.  I know it's late.  I'll just lie here and be quiet.  I know it's important to be quiet.  There are other people in the house, after all.  So, that's what I'll do.  I'll just be quiet.  Being quiet is good.  I can do this.  I can be quiet.  I don't feel good but I can be quiet.  That man that helped me is so wonderful.  I can be quiet for him.  I think he is here.  Are you here?  Would you like me to be quiet?  If you'd like me to be quiet, I can do that.  I wonder if he would bring me food.  Food would be good. It sure is dark in here.  Dark is good.  Oh, my.  I do not feel good.  But, I can be quiet anyway.  Would you like me to be quiet?  Quiet would probably help me feel better. Well, quiet and some food.  Did the bed just move?  I'll be quiet anyway..."

---I will give you a 25 minute break here... a break that that I did not receive... I give it to you because I like you---

"...I'm getting tired now.  Very tired.  I'm sleepy.  I guess being quiet helped.  I like to be quiet.  I know that I'm not bothering anyone when I'm quiet.  I'm sleepy.  Really tired..."

  ---her voice gets very quiet... finally---

"... I think being quiet made me sleepy."

---snoring---

I sneaked back to bed at 5:30.  I laid there, wide awake just listening for her.  I must have fallen asleep because I was startled awake by a dark figure of a person looming over me saying, "Go ahead and sleep... I can be quiet." 

Let her be...

I have a strong memory of being young and running to my mom and tattling on a cousin who was younger and not as wonderfully behaved as I believed that I was.  I don't think that I was tattling to get her in trouble as much as I was showing off... I knew that what she was doing was wrong.  I knew the rules.  My mom's answer to me was, "Is she bothering you?"  No.  "Is she hurting herself or anyone else?"  Well, no.  "Then let her be."  At the time, I thought this was crazy talk.  There were rules that needed to be followed.  I honestly just figured that Mom was too lazy to do anything about it.

As I grew older and became the one in charge, I eventually learned the lesson that she was trying to teach me.  I have remembered it many times while parenting my own children.

As I sit here with Pandora in my headphones, I am watching my mother remove the contents of a wastebasket and lay them out on the couch.  She is sorting the items and neatly stacking them into piles.  When I think she is through, she goes back and moves the piles and rearranges the stacks.  My first impulse was to yell, "What are you doing?"  But, then my mind traveled back to my childhood and I hear her voice,  "Is she bothering you?"  Yes, but I can look away.  "Is she hurting herself or anyone else?"  No.  And I just let her be.

Being positive...

 I am running out of options today. 

Alzheimer's Association Alzheimer's Disease Facts and Figures 2014

 I shared the Facts and Figures video from the Alzheimer's Association last year.  Here is the video for 2014.  It's sobering.  Let's hope and pray that these will soon be a thing of the past. 

No choice...

I can't do this much longer today.  I don't know how she has this much energy.  She got up at 2 am and slept off and on until 7... mostly off. She's been going non-stop since then.  Her whining is on auto-rewind. She wants everything that she can't have.  She is trying to move the furniture in the living room to look for something.  She is digging in trash. She's trying to break into locked doors. The entire day she has been angry and agitated. I currently have her locked in her room because I don't have the strength to handle it responsibly. I just want a break, even if it is only for 10 minutes. I can  hear her screaming for the neighbors and telling them that I am going to beat her.  Now, she is sawing at the crack between the door and the jam with a hanger.  I have to let her out.  I don't want to, but my 10 minutes are up. 

She's out and pulling on the couch. 12 hours and counting.  I can't do it anymore today, but I will.  I have no choice.  I have to remember that she doesn't either, but right now that's a challenge. 

Lost in the fog...

One of the aspects of this disease that I find interesting is when Mom has a memory.  Memory is probably a strong word ... she occasionally has a sense of having done something before.  When we sit down at her favorite table at McDonald's, she will sometimes say something like, "I've been here once before, haven't I?"  Or, as we turn down the street that she has lived on for 40 years, she'll say, "I used to know someone who lived on this street."  I always find that comment sadly insightful.

After her shower this morning, Mom was sitting on the couch, looking around, and commenting about things in the room... "I've seen that before.  You've brought me here before.  This looks familiar."  Her comments and attitude makes me imagine how it must feel to walk around, lost in heavy fog when, in the distance, you spy the outline of a familiar building, only to watch it be swallowed by the fog again.  You're still lost, but for just a moment, you have the hope of finding your way home.

As for this morning's memories, I knew the fog had returned when she picked up a tissue from beside her and said, "Now this looks familiar!"

Every day...

Every day.  Every day, I wake up and think, "Today's the day.  Today is the day that I make it through without crying." 

Time flies...

Today's conversation that you all are dying to read (for a more realistic read through, read Mom's part with a whiny-poor-me voice and my part with a you've-got-to-be-kidding-me voice):


Mom jumped up and said, "I need to go to the bathroom.  Now!"

Me:  "Okay.  It's open."

Mom looked into the bathroom and said, "There are two of them in there!  I can't go!"

Me:  "Mom, there is no one in there."

Mom:  "Yes, there is!  There are two of them in there!!  And they won't move!  I guess I won't go."  She sits down on the couch.

I got up and looked and there was a cat sitting on the closed lid. She left as I looked in.

Me:  "It's empty.  The cat left.  You can go to the bathroom now."

Mom:  "No!  There are three of them in there!"

Me:  "I made them leave."

Mom:  "No, you didn't!"

Me:  "Mom, go to the bathroom. No one is in there."

Mom got up, walked right by the bathroom and went to her room where there were, you guessed it, 2 cats.  "See?  They are right there!" 

Me:  "Mom?  You're in the bedroom." 

Mom:  "It's my bedroom.  So, it's none of your business!"

I got up and tried to help Mom to the bathroom.

Mom:  "Don't touch me!  I'm not going in there! I don't need to go to the bathroom and I'm tired of you trying to make me!" 

Me:  "Okay.  I'm done helping."

Mom sat down on the couch and said, "I really need to go to the bathroom.  Is it empty?"

Me:  "If time flies when we're having fun, it must be 1965 already."

My words of advice...

We all make the decision to become a caretaker for different reasons-  love, compassion, responsibility, obligation, finances-  or simply because there is no one else.  My reasons are probably a combination of all of those and a few more.  But, the why of it all isn't important.  It doesn't matter how we got here.  We are here.  And, I know that most people who know a caregiver would love to help, if they only knew how.  I have some suggestions on how to help.  I am not speaking for anyone but me.  Other caregivers may or may not feel this way.

-Please do not tell me how to care for my loved one.  I appreciate suggestions, or "have you tried..."  But, when you tell me the right way to do something, or start your advice with "You need to..." or "You should...", I am hearing that you have been here every day with me and know what I have tried and haven't tried.  I also hear that I am not good enough.   When I hear a suggestion, I hear that you are not questioning my care...  you are supporting me and helping me to be a better caregiver.

-Please encourage me to share my feelings.  And remind me that my feelings are normal.

-If you don't want me to talk about my situation, then please don't ask.  I know it gets old  hearing the negativity about it.  But, there isn't a part of my life that this does not effect. Please realize that this situation, and the incredible responsibility of it, is always at the top of my mind

-Please, please, don't call me a hero.  Or a saint.  I'm not.  The horrible things that come out of my mouth daily are not words from a saint or a hero. They shame me.  I do not feel worthy of the praise.

-Most of the articles and blogs that I have read suggest that stepping in for a caregiver so that they can get out for a few hours would be the greatest help.  For me, it wouldn't.  And I would never accept.  I would appreciate and cherish the offer, but I would be so worried about YOU, that I would never enjoy my time.  And, I guarantee that you wouldn't enjoy yours either.

-The best thing that you can do to help is something that most of you already do... you are here supporting me and reminding me that I am not alone.  And that help is truly and deeply appreciated.

The advice of a stranger...

This evening I ended up at the mall with Mom after I had just spent almost 12 hours listening to her complain and argue.  But, at the mall we were, handling a small emergency situation that came up.  As we were standing and waiting for the person that we were there to help, Mom was in her normal, agitated mood.  She was trying to flag strangers down, yelling at me that "he" was getting away, looking around wildly for my nonexistent son.  The only thing that usually works in this situation is to leave.  Well, it doesn't really work, it just makes it stop being an attention getter.  But, we couldn't leave at that point, so we were making the best of it.

While we were standing, a woman approached Mom and said, "Do you have a problem?  What's wrong?"  I smiled and explained that Mom has Alzheimer's and she's just upset.  While that answer usually takes care of the situation, tonight it didn't.  It created a new problem, at least, for me.  When the woman heard the word Alzheimer's, that was it.  She knew all of the answers.  After all, she used to care for a woman who had Alzheimer's.  She said, "Is your Mom 101?  No?  Then you don't know how easy you have it. Here's what you do."  10 minutes later she was still telling me what to do.  I should be rubbing my Mom's feet.  I need to be brushing my mom's hair until she tells me to stop. I should "yes, Ma'am" her until the cows come home.  I should make her the queen of my life. 

Part of me stood there and listened to this woman and thought, "If it was only this easy." And that part of me  left the mall feeling like the worst daughter ever.  I would be less than honest if I said that the only queen my mom makes me think of is the one with a poison apple in her hand. 

It has taken me a couple of hours to calm that feeling.  It's still lurking, but it isn't overwhelming any longer.  That woman was hired to take care of a stranger who was far enough into the disease that the ability to speak was gone.  Yes, I'm sure that at that point, rubbing feet and brushing hair would be comforting.  But, my mother has a voice and it isn't kind. Even the gentlest of touch is met with accusations and screams of pain.

I hate this disease.  I hate that I have allowed it to question myself and my abilities to the point that I come up lacking.  I know in my heart that I am not the best person to be doing this for my mother.  But, I also know I am the only one she has and that I am doing the best that I can with what I have to work with.   Luckily, I never have to treat Mom like a queen.  A duchess?  Maybe.

Do not open your eyes...

 I am asleep on the couch in the living room at 4 am.  Mom enters the room.  

"I'm awake!"

Do not open your eyes.  Do not change your breathing. 

"Is anyone awake??  Hello?  Is anyone else awake?"

Do not move!  Do not respond!  If you remain quiet she will move on to other prey!  REMAIN QUIET!

"I just got up to tell you that I'm awake and that I love you.  All of you."

She walks away.  I turn over and open my eyes.  She's still there!!  Close your eyes!  Calm down!  I repeat, calm down!  She can sense your fear!

"Okay.  Well, I'm going to try and go back to bed.  Please, I do NOT want to be woken up again.  Please!  Just let me sleep this time!  Good night!"

I cannot wait until...

I can't wait until...

- she goes to bed.
- she goes to sleep.
- she goes back to sleep.
- her meds kick in.
- Monday and day care.
- I don't have to make an appointment to take a shower. 
- Tuesday and day care.
- someone gets home so I can go to the bathroom.
- Thursday and day care.
- she is quiet.
- we can do something as simple as go to dinner as a family.
- someone gets home so I'm not her only focus.
- my family can go home and be a family again.
- she finds her peace.

I just want a shower...

I just want a shower.  That's all.  Apparently, that is not going to happen.  I wanted one yesterday, too.

When my girls were toddlers I used to hang a Johnny Jump Up in the bathroom door.  They bounced and laughed.  I watched and showered.  Very simple.

I wonder if they make a Johnny Jump Up Senior? 

I just want a shower.

A question of control...

I love that even though Mom has a disease that hasn't taken control of her life, she still finds ways to be the one calling the shots.

I just gave Mom a bowl of food for dinner. It was a decent sized bowl of steak, gravy, mashed potatoes and veggies.  She ate about half and gave the rest back to me saying that it was too much.  Knowing Mom, I set it to one side and went on eating my dinner.

It took about 5 minutes before she asked why she didn't get to eat.  After all, she hasn't eaten in 3 days.  She then became very nasty that I was eating in front of her and that I always steal her food.  I handed her the bowl of food that she had just rejected.  Her response?  "That's it?  That's all I get after three days of you eating all of my food?  I'm not eating this!"

We moved on to, "Are you warm enough?  I'm cold.  I'll bet you're warm, aren't you?  It's always all about you." 

We soon returned to the food complaints. "I'm hungry and I'm not eating this crap."  I used my best mother  voice and told her that she'd better eat it all because she wasn't getting anything else.  She ate the food... all but one bite.

A noose made of money...

I recently watched the testimony that Seth Rogan made before the US Senate about Alzheimer's Disease.  In it, he commented, and I'm paraphrasing, that he didn't know how the average person is able to afford the care for a loved one with Alzheimer's.  I don't know either.

I have experienced lean times in my adult life.  But, it was a very long time ago, when I had first started out.  Through hard work I had reached a point in my career that my children and I were comfortable.  We weren't rich, but we could afford some extras and our bills were always paid on time.  I had money in savings for a rainy day and I would be heading into retirement with my home paid off.  We even had health insurance that I could afford.

All of that is gone now.  A lifetime of working and following the rules is gone.  I am stuck in a situation that is unimaginable.  For the first time in my life, I have bill collectors who have every right to be hounding me.  I am part of the section of society with their hands out... I never have begrudged those who have needed a hand but I also never thought I would be one of them. Unfortunately, the powers that be have decided that I don't need help.  I own my home, therefore, I have assets. So, my problems are my own. I live in fear of anything going wrong because I have no cushion... no contingency plan for emergencies.  And the scariest part of all is that when this all ends, I will be heading back into a career field that makes hiring decisions based, in part, on credit checks.  I worry... who will hire a bankrupted older woman to run their business? 

So, I sit here feeling sorry for myself and being ashamed of something that I have no way to change.  And I wonder how much more tolerable this situation would be if I could simply pay what I owe...  If when sleep is available to me, that I wasn't lying awake worrying about money.  Would there be more patience and tolerance if the resentment I feel towards the situation wasn't so consuming?  Will I spend the rest of my life fighting my way out of a noose made of money?  Will I forever regret making a decision that was only right for someone else?