She has still got it...

If it isn't too hot, Mom and I sit out on the front porch waiting for the daycare van to arrive. I usually take out a snack for her to munch on while we're waiting (yes, at 8:30 in the morning she needs a snack). This morning I had a ziploc bag of peanut butter and honey sandwiches. She had already eaten a couple halves. She reached over and starting examining the bag with the rest of the sandwiches. I knew that if I didn't pay attention that the bag would go into her purse. “Put it down.” She immediately dropped it and responded, “I know. I was just checking to see if you were paying attention. You did very well.”  

My first day of support...

Mom's daycare holds a support group for caregivers every Tuesday afternoon.  I have wanted to go but could never figure out how to attend and still be home in time to get Mom off of the van.  Mom's van driver told me last week that the center would keep Mom until the meeting was over.  I would just need to take her with me when I leave.  Well, okay then.

So, today I attended my first support group.  I was a little apprehensive, I wasn't sure how honest I would be able to be considering that they know Mom.  It was an all woman group today and the ladies couldn't have been lovelier or more supportive.  Three ladies were early, like me, and put my fears to rest.  They explained that what is said in the room, stays in the room.  No judgement.  And they meant it. 

Everyone welcomed me with smiles and encouragement.  The director asked someone to share with me what she takes away from the meetings.  I knew most of what she was going to say... you meet people that are going through the same things, you're not alone, you have to make time for yourself.  But, the one that struck a new note was that you walk away with the appreciation that things aren't so bad at home after you've heard other people's stories, that other people have it worse and they are surviving it.  

It was a relaxed group.  The talk was about caregiving but also about their lives.  Everyone had a chance to speak.  I did fairly well, I didn't cry for anyone.  I wanted to, but I withstood the pressure.  But, I did cry for myself.  Yep, the director asked me what I have found to be the hardest thing in caring for my mom.  And I lost it.  But, the good part?  I had people nodding in understanding as I answered.  The woman next to me rubbed my back as I made it through my words.  It was very relaxing for me.  

In response to another person's comment about feeling isolated, I shared that I don't take Mom out much anymore.  The director responded that from what she has seen in the short times that Mom is at the center, she can't imagine ever being able to take her out.  Wow.  She gets it and doesn't judge.  

But, the thing that surprised me was that I didn't have the feeling that my situation wasn't so bad, that others have it worse.  Yes, there were some heartbreaking stories and I feel sympathy and empathy for every one of those women's situations.   Mostly, I felt relief that there aren't a lot of people who have to deal a loved one as angry and bitter as Mom.  And that makes me happy.  

A little positivity...

Most of the time when I give Mom something to eat, she has a complaint... it's too big, it's too hot, it's too cold, I didn't want that, etc.  We usually only give her part of something because large portions overwhelm Alzheimer's patients.  And Mom is easy to overwhelm.

She likes peanut butter and honey sandwiches. She gets them a half at a time because we all know how overwhelming an entire peanut butter sandwich can be.  It seems to be her go-to snack.  It's easy to eat.  There's some protein.  It's sweet so she can taste it.  And she doesn't gripe... much.

I just gave her a half and heard, "What am I supposed to do with this?"  "Why would I eat paper?"  "Do you want this?"  "I don't want this."  "This is horrible!"  And repetitions of all of these as she held it and refused to eat it despite just complaining that she hadn't eaten in 3 days.

So, when she finally finished it and I gave her the second half, I never expected to hear, "Wow!  I've always wanted one of these and never was allowed to have one!  Thank you, so much."  "Oh! This is so good!  Why haven't I ever had one of these?  I want this again!"

I find it sad that those 3 short minutes of positivity is noteworthy enough to write about.

 

I am totally innocent...

Soooo, Mom had some water on her shirt today.  I don't know how it got there.  I know I would never dump the inch of water that was left in her cup when she griped at me yet again.  I did, however, get her another shirt.  A dry one even.  But, she couldn't get past the fact that her shirt was wet.  She started by flapping it around, frantically and with lots of complaining.  Just as I didn't dump water on her, I also did not suggest she blow on it to dry it faster.  That would have been mean.  And not funny.

Sorry for the poor quality.  I wasn't shaking from the uncontrollable laughter while taking the picture.  As I said, that would just be mean.  

Tears of a clown...

"Tears are words the mouth can't say nor can the heart bare." - Joshua Wisenbaker

"I didn't know why I was going to cry, but I knew that if anybody spoke to me or looked at me too closely the tears would fly out of my eyes and the sobs would fly out of my throat and I'd cry for a week." - Sylvia Plath, The Bell Jar

I'm a cryer.  I can't deny it or hide it.  I cry when somebody does something selfless for someone else.  I cry when I perceive pain or heartache.  Heck, I cry at commercials and when someone sings a beautiful song.  I cry when I feel strongly and am trying to articulate those feelings.  I'm a cryer.  

Lately, you could call me a frequent cryer.  I don't know if it is the frustration and stress of the situation, or possibly from the guilt I feel.  I am sure menopause has a huge hand in it all.  As well as my recent poor health.  It's probably a combination of all of those things.  

But, one thing I do know is that my tears of late have transitioned from my eyes quietly (and privately) leaking, to great, racking sobs.  I never know what will set me off.  It could be anything from 2 rude women chastising me, to someone borrowing a hairbrush and failing to return it.  It is unpredictable and it is all-consuming.  It is frequent.  

Do I feel better after the breakdowns?  Sometimes.  Other times I feel even guiltier.  I know my girls worry about me.  And I hate the stress that it adds to their lives.  Occasionally, I feel refreshed and ready to start again.  But, mostly I feel out of control.  There is so little left in my left that is my choice.  And, uncontrollable tears are just another thing that is out of my hands. 

Where am I...

I need help.  I need to find me again.  I've lost the person that I was.  The smart alecky, sarcastic, silly person who could almost always find a smile is gone.  I have become a hermit.  Yes, partly by circumstance, but mostly because I avoid people.  I don't want to talk to anyone or let them see who I have become.  I would rather stay home than see the people I care about.  It is becoming almost painful to socialize. 

I dread the question, "How is your Mom?"  I know it is a polite question full of genuine interest.  But, I have no answer.  She's dying.  She's miserable.  So, do I tell the truth or do I find a fake smile and answer, "The same."? 

But, even more, I dread the question, "How are you?"  Because I'm afraid I will melt into a puddle of tears if I have to answer.  I'm afraid that the truth will push people away even farther than these circumstances require.  I dread the pity that I will see.  Luckily, I am rarely asked about me.  Maybe people sense my reluctance to answer or are afraid of my answer. 

Maybe I am invisible. 

Running on empty...

It always surprises me when a meltdown strikes, not Mom's, those are like clockwork.  I'm talking about my meltdowns.

Let me go back to the beginning.

We were having a quiet beginning to our 4th of July.  My youngest and I were having a friendly argument about her choice of clothes to wear to see fireworks tonight.  She said her shirt was red.  I said, and still say, that it was burgundy.  So, we headed to Walmart to buy a cheap red tank top.  All was good. 

On the way home, I realized that the gas was below a quarter of a tank so I stop to get a few gallons.  I didn't feel like filling the tank because it was hot out... 100 degrees at noon.  It was hot but not horribly.  I am just about through pumping, I only got $20  worth, so maybe 3 minutes at the pump?  Katie and Mom are sitting in the car, in the shade, with all the windows down.  As I shut off the pump, 2 woman pulled up in front of me and started yelling at me that "she is hot".  They point to Mom.  I said, "Yes, I'm aware.  It's hot for everyone."  They said, "Well, she is so hot that she had to tell me.  You need to take better care of her." I realize that they aren't being friendly and I ask, "Seriously?"  Then the woman leaned over and screamed at me, "You need to help her not stand there and argue with us!" 

I was livid.  How dare they butt in where they knew nothing of the situation.  I wish that I believed they   thought they were helping.  But, what exactly was my alternative?  Run out of gas and sit on the side of the road indefinitely with Mom?  Come out earlier in the cool part of the day?  The same time that this morning we all finally had gotten to sleep after Mom stayed up until almost 4 am?  Should I wait until it cools down in the evening?  That's right about the time that Mom starts her paranoia trips. 

So, now I'm angry that they didn't think it through at all.  How long was Mom sitting there in the heat?  Three minutes that she was supervised, that I knew was temporary and with a cold drink?  Did I walk away from the car?  Was I schmoozing with someone that I ran into?  Could I have broken the law and left the motor running and endangered everyone's lives? What should I have done differently?

And, of course, my anger turned to tears.  Lots of them.  And a major meltdown ensued.  The public disapproval reinforced my (and most caregivers') feelings of inadequacy, of not doing enough.  No, it's not fair to feel that way.  But, a lot of us do.  And, public shaming is always a degrading experience. 

As I finish this and consider an apt title for this entry, I realize that running on empty represents so much more than today's post. 

Image credit:   http://morguefile.com/archive/#/?q=gas%20gauge