Clap your hands...

Do you remember leaving your child for the first time at preschool or kindergarten?  You probably had mixed emotions.  You knew that they were in well trained and caring hands.  They needed to be there.  But, the screams of "Don't leave me here!" broke your heart.  You expected to hear about all of the things that they learned and how nice the people were that helped them.  That part is exciting, but the bad habits that they seem to pick up are frustrating and a new challenge that must be handled.

This walk down memory lane is pretty much what happened when I left my mom in well trained and caring hands at the hospital. Yes, there was screaming as I walked away.  And, instead of hearing about wonderful experiences when she came home (no, I really didn't expect a miracle), I received a physically healthier mom.  For that I am thankful. Unfortunately, we were also gifted with some new bad habits to challenge us. 
 
Here's a quick little story that will make sense in a minute...  When I was 10 or 11, Mom used to take me to the convalescent home where she worked.  I hated it.  What I most remember is the screams.  It seemed like every room had a resident screaming, "Help me!  Oh, please, help me!  Don't leave me here!"  I'm sure that there weren't that many screams, but, to my young ears, it sure sounded like it.  It made me feel helpless and scared.

Which leads me to one of Mom's newly acquired behaviors... screaming.  "Help me!  Somebody help me!"  It is still heartbreaking to hear.  And I feel just as helpless.  There is little to do to soothe her. Offers of help are met with anger and frustrations.  Distractions are non-existent these days.  Offering a hand to hold is grounds for getting that hand slapped.  Helpless.  Both of us.

My favorite new challenge is the the tapping.  And clapping.  And poking (strangers like this one, too).  And knocking.  And pounding.  If there is a surface, or body, or even two available hands (like the two she has) she will make some kind of rhythmic noise.  If she needs your attention beyond the yells and crying, she will poke you.  Often.  And anywhere. On anyone.  It's a fun challenge.  Tonight we received a special performance, I could actually pick out the rhythm of a song. 

It would have been the perfect ending to this post if the song had been "If You're Happy and You Know It, Clap Your Hands."   She could have changed the words in the final verse:

If you're unhappy and you know it, clap your hands, bang the walls, poke someone.
If you're unhappy and you know it, clap your hands, bang the walls, poke someone. 
If you're unhappy and you know it, then your hands will surely show it,
If you're unhappy and you know it, clap your hands, bang the walls, poke someone.

Let right win...

It has been an emotional and stressful couple of weeks.  Here is an update on Mom's condition:

Mom is doing well as far as her physical health is concerned.  She has recovered from the pneumonia.  She is understandably weak and has been in a skilled nursing facility for several days.  The original goal was for her to stay only long enough to get her strength back and then come home.   Unfortunately, she is about an hour away and I don't get to go to see her every day. 

After seeing her at the home yesterday, the goal has changed as I have realized that I am just not qualified to give her the kind of care that she will be needing soon.  Additionally, Medicare rules being what they are, we might not have the opportunity to place her in a long term facility again.  So, we are trying to find a permanent home for her where her needs and comfort can be met.  

This was not a decision made quickly or without a lot of thought.  I believe it is the best choice for her overall comfort and care.  I have made comments and observations that the woman I have taken care of for all of these years is not my mother.  It is a horrible disease destroying her body and her mind with very slow, very sure steps.  But, the bottom line is that disease ravaged person is still my mom.  Regardless of how I feel about the impact of the disease, I want my mom to be safe and comfortable.  I think this choice will help make that happen. 

Finally, I would be less than honest if I said that part of the decision is for my and my family's well-being.  We have survived this disease but the cost has been enormous.  I have lost a sibling, my financial stability and my children's childhoods... and sometimes even my own sanity. 

I hope and pray that this decision works out.  There are still a lot of hoops to jump through and red tape to be cut.  But, I'm a firm believer in what is right will win. 

I am thankful...

The girls and I left the hospital earlier than usual tonight.  I try to stay until Mom is settling down for the night.  But, I think the long week was taking its toll on me.  I was just simply out of patience.

We had dinner and came home.  I encouraged the girls to go out and just relax for the evening.  They decided to go bowling and just have a little fun.  As they were leaving, Kylie looked at me and said, "I'm sorry, Mom.  I should have asked you if you wanted to come with us."  It's was strange to realize that going with my girls was a choice that I could make.  We have left someone behind for so long that it never occurred to any of us that my joining them was an option.  It has been a very long time since we've had the luxury of doing things with just us.

Now, as I sit here in the quiet of the house, I find myself with one ear towards Mom's bedroom, listening for movement, preparing myself for the turmoil that Alzheimer's brings to our home.  When it remains quiet, I remember, she's not here.  She's a few miles away, safely tucked into a bed with people better equipped to care for her. 

For this small period of time, my mother is safe, my children are happy, and there is peace in this house. 

And I am thankful.

Praying for peace...

As I just pulled up my blog for the first time in 8 days, I am surprised at how much can happen in such a short amount of time.  My last entry was such a silly reflection of a light moment in this disease.  So, much has changed.

Mom is currently in the hospital fighting pneumonia.  She has been there for the last 6 days.  She's receiving 2 intravenous antibiotics, is hooked up to oxygen, has an alarm on her bed to notify the nursing staff if she attempts to get up, and has restraints on her wrists.  While seeing her being restrained is uncomfortable for me, watching her trying to rip IVs out and pull off the oxygen that she desperately needs is worse. 

Each day she looks weaker and more fragile to me.   I am feeding her as if she is my child.  I hold her hand, but it isn't to bring her comfort.  It's almost as if we are arm wrestling.  If I win, the tubes stay in place for just a little while longer.  She regularly calls my name now, something she hasn't done in years. Somehow in her fight, she knows that I'm the one who is there with her.  She begs me to help her. Yet, the help that I give is not what she's asking me for is not what she wants.

That leads me to wonder if, somewhere in the depths in her ravaged brain, she understands what is happening and just wants to be done. 

So, for now, I am simply praying for peace and leaving it to Him to decide what that peace will be.  

We all need a friend...

Mom has started a new behavior that, for the most part, is kind of fun.  She talks to herself.  I don't mean that she just mumbles things or says what she's thinking.  She actually thinks that she is talking to another person.  Here's one of her conversations today at the closed bathroom door.

Knocks on door.

Mom #1:  Is anyone there?
Mom #2:  Yes, it's me, Andrea, I need to go.
#1:  My name is Andrea, too.
#2:  It's a good name.
#1:  Are you going to be much longer?
#2:  I just got here. 
#1:  Me, too.
#2:  Do you need to go, too?
#1:  It's okay.  I can wait.
#2:  Okay.
#1:  Aren't you going to say goodbye?
#2:  ...
#1:  Well, how rude!

She often sits on the couch across from me and does the same thing.  She'll look at me and ask some random question like, "Are you hungry?"  Before I can even decide if I want to answer (again) she'll say, "Oh, I am, too." 

I'm glad that she found someone who listens and understands. 

No apologies...

Well, it's been a few weeks since I've had much to say.  Things have been going along fairly smoothly (I laughed to myself as I wrote that.).  Smoothly is, obviously, a relative word.  But, no major meltdowns or public scenes to report. 

The one noteworthy piece of news is that the doctor did prescribe a medicine that seems to have helped.  It's not a cure all for Mom's erratically agitated behavior, but it has helped. .

Her negativity doesn't have me pulling my hair in frustration.  The litany of complaints hasn't left me dependent on earphones and Pandora for my sanity.   The irrational accusations and delusions haven't frustrated me to the point of anger. 

Overall, I'd say the prescription has been a qualified success. Some of you have probably figured out that the medicine was not for my mother.  Yep, my doctor gave me an anti-depressant.  Unfortunately, I'm finding there is still a huge stigma attached to this type of drug.  I have already had to defend myself for choosing to use it.  And that is just ridiculous.  But, that's another story for another time.

The point is, it has helped.  I haven't cried in more that 2 weeks.  That might not seem like a big deal.  But, I was crying several times a day.  And I don't mean that I would just tear up.  I cried hard and often.  I am more patient with Mom.  She still drives me crazy, but not to the point of intolerance... well, for the most part.  My girls have even seen an improvement. One daughter said that I am more mellow.  The other said that I'm calmer and in a better mood.  So, yeah, a success. 

What a way to start the day...

I don't know whether to laugh or cry this morning.  Mom is extremely delusional.

She just banged on the bathroom door and got my daughter out of the shower.  When Katie answered the door, Mom said, "Mr. Marley, I presume?"

She was trying to zip up her jacket and couldn't do it, mainly because she was starting at the top.  I usually let her try to figure it out herself until she starts to get frustrated.  So, I was still letting her do it when she figured it out.  She looked up at me and said, "Wow!  You figured it out.  You're a smartist!"

She rapidly accelerated into the delusions. She started screaming for me to help find "him".  I mean screaming!  She looked at me and said, "Find my f***ing father!" 


She moved on to banging on all of the doors looking for him.  She opened the unlocked (oops on me) closet door, started grabbing jackets and saying, "Is that you?  Why are you hiding from me?"

She turned and screamed at me to help find her father.  She then came over and grabbed my wrist, twisted it and said, "Maybe you don't understand what please means when I say it?"

When she's like this, there's not much to do but let her rant and just make sure she stays safe. There is no reasoning.  No using logic.  Distractions are a waste of time.  Yes, I tried.  She is currently trying to pick the lock on my oldest daughter's door.   She's using an empty toilet paper roll, so I don't think I'll have to defend the premises anytime soon. 

So, I'm sitting here hoping that she winds down before the day care van arrives.  I can't, in good conscience, let the driver deal with her when she's like this.  I've given the maximum dosage on her meds.  I just hope they kick in soon. 

No guarantees...

I gave Mom a slice of marble pound cake as a treat. After all, sweets are what they love the best, right?

After about 2 minutes of looking at it:

Mom: What do I do with this?

Me: Eat it. It's good.

Mom: Do you want it?

Me: No, thank you.

Mom: How good is it if you don't want it?

She picks a small corner off and puts it in her mouth.

Mom: Can I put this in the refrigerator?

Me: No.

Mom: What should I do with it?

Me: Just eat it.

Mom: How?

Me: Put it in your mouth.

Mom: The whole thing??

Me: No, just part. You can take a bite.

We go back and forth a few more times.

Silence.

Mom: What should I do with this?

Me: Eat it.

Mom: How?

Me: Take a bite.

Mom: With my NOSE???

Me: That's up to you.

It's been about 8 minutes and it's about half gone.

Silence. But, she's just holding it like someone handed her a dirty tissue.

Mom: What should I do with this?

Me: Could you please just eat it?

Mom: Why? So you can poison me?

Me: Just set it on your plate and I'll take it.

Mom: And that's why I haven't eaten in 3 days.

Me: Do you want it or not?

Mom: Who made you boss? Can't I just eat it without you pestering me?

Apparently not.

This conversation lasted about 15 minutes. She pulled off enough that there was only a squished piece about the size of quarter between her thumb and forefinger.

Mom: What should I do with this? 

No, I didn't give the obvious answer that I so wanted to give.  I can't guarantee my response next time. 

There is still one left...

Add another Burger King to the list of places that I can't take Mom.  This time the situation was mostly my fault.  Mom has become so picky about her food that I take her to fast food more than I normally would.  But, if she'll eat it, I will go. 

Her behavior is so bad in public that I rarely am able to actually go into a restaurant with her.  So, yesterday we went through drive thru of the local BK.  It was late afternoon and Mom was very agitated and delusional.  As we are sitting there, and I'm watching my sanity leave with each click of each minute going by, Mom said, "I'm only six years old and you have me locked in here.  Someone PLEASE give me some scissors."  She was going through the accompanying contortions of trying to remove the seat belt.  She is gesturing and screaming for her escape. 

Finally, the young man sticks his head out the window and says, "Could you do me a favor? Can you pull around to the front of the building and I'll bring your food out to you?"   The only thing that kept me from grabbing  the poor guy by the throat and shaking him was the many times I asked the same thing of someone in my own fast food working youth.  So, instead, I said, "How long?"  He sheepishly said, "2 minutes?"  I responded with no filters and said, "Okay.  But, if I kill my mother in that time, I'm holding you responsible." 

I only felt bad because I honestly didn't know human eyes could get that big. That looked really uncomfortable.  I'll bet he thinks twice before asking someone to move again. 

Will it be enough..

You know what I miss?

I miss the option of walking away to cool down when things get too overwhelming. No matter how bad it gets, how intense, how horrific, I am here dealing with it.  No cool down periods allowed.  Day care looks a long way away on an intense Saturday afternoon. 

You know what I wish?

I wish that I had a magic insulation bubble that keeps my family safe from the intense feelings that I am feeling.  I wish that in the heat of the moment that they could remember to just let me be.  Or if they can't, they need to not add to the intense feelings by getting angry with me when I lose my patience.  It's the same every time.  I am trying to hold it together and they get involved and I lose it.  I know I'm wrong.  I know that.  But, I can't handle the guilt of every bad feeling that happens in this house. 

I have nothing left.  Give me some space while I try to find more.  Until then, I'm sorry will have to be enough.

What is heavier than stone...

After our day of stone, I was hoping for an evening of diamonds.  Okay, maybe not diamonds, but at least something a little less ugly. 

Here we are, 18 hours after she got up for the day and she's still going.  She never settled down.  A double dose of medication didn't touch the agitation today.  Right now she is in the almost dark hallway searching for something.  She tries a door knob, if it is locked (and all but 2 of the 6 are) she feels around the doorjamb, bottom to top, across, then down the other side.  She then moves on to the next door.  If the door is open, she closes it and then feels the doorjamb.  On to the next door.  Searching.

You wouldn't think that simply running your fingers along some trim would create much noise, somehow it does.  When she arrives at her own opened door, she turns on the light, looks around, turns off the light and goes inside.  There she feels around the trim of her closet.  She then moves back to the hallway and starts back at the beginning.  I feel like I'm watching a live version of that children's story that never ends.  

All of this is while she is under the influence of a pill that should knocked her out two hours ago.

Our day of stone is turning into a night of lead. 

Definitely stone...

Some days go by like so many that have gone before, filled with simple frustrations, annoyances, arguments, and occasionally some laughter. For the most part, the days are often the same.

But, some days, oh, some days, the disease is especially cruel. She wakes up agitated and rarely will anything calm her. Not her medications, not distractions, not food, not trips out of the house, and definitely not kindness.

Today is one of the agitated days. She started it by getting up while it was still dark and sitting at the foot of my bed and talking. By talking, I mean non-stop barking of orders, “Get up. NOW!” “Put your shoes on and take me to breakfast. You promised!” “I said get up! NOW!”

It progressed to her poking my feet to get my attention. Ear plugs dimmed the demands. There isn't a lot that blocks someone poking your feet while you're trying to sleep.

It's now 3 o'clock in the afternoon and just the sound of her voice is killing me. I know that sounds like a huge exaggeration, but that is what it feels like right now. I'm straight lining Pandora into my ears. And while that blocks out the grating of her voice, it does increase her pantomiming around the edge of my laptop screen. Katie refuses to leave the room. I'm not sure what she is more worried about, me or her grandmother's safety if I lose it completely.

Days like this always have me mentally singing that line from an old John Denver song, “Some days are diamonds, some days are stone.” Today is definitely stone.

It would break her heart...

Before Mom's disease prevented her from being left alone, she was well known in the neighborhood.  She walked around and talked to people.  There was a family that she used to stop each day as they walked to and from school.  There were several kids in the group but even the kids in the strollers would excitedly yell, "Hi, Andi!"  They loved Mom.  She loved them.

As we got home from her doctor appointment today, the kids were passing the house.  They yelled, "Hi, Andi!"  We haven't seen them in a long time.  The kids that were in the strollers are now 7 or 8 years old.  Their mom gave them permission to run over and visit Mom. They were so excited to see her.

Unfortunately, Mom was still agitated and angry and was rather nasty to the kids.  One of them sadly asked, "Don't you remember us, Andi?"  I tried to tell them how much happiness that they brought Mom each day and explain the disease and what it meant.  They didn't understand.  Heck, most days I don't understand it either.

As they walked away I heard one of them sadly say, "I can't believe Andi doesn't remember us." 

And Alzheimer's forced a bigger wedge into the crack in my heart. 

Another day that was not okay...

We drove to Los Angeles for an appontment with Mom's neurologist that was scheduled 4 months ago.  Unfortunately, Mom had been especially combative the entire day.  We had about 30 minutes to kill before we could check in, so we went out to a small courtyard that has vending machines and seating.  I thought that would be better than making Mom sit still in the waiting room.

It wasn't.  She was argumentative and uncooperative with everyone.  She demanded that strangers help her.  She would grab them by the arm and demand that they "do something".  Most people were sympathetic but there were a few who were clearly irritated.  I had a difficult time getting her back into the building so that we could check in.

We never checked in.  It turns out that they had cancelled the appointment 2 weeks ago.  They said they sent a letter that it had been cancelled and that they called me yesterday and told me.  I'm sure that they are telling the truth (sarcasm) because I would gladly choose to put myself through that hell and the trip to Los Angeles all for the fun and excitement of it all.  Their idea of help was telling me that they had rescheduled the appointment for the end of December.  Seriously.

I told the receptionist that we needed to see someone today because Mom's condition couldn't wait until December.  She said that we didn't have any choice because there was no one there to see her.  I asked what part didn't she understand, my mother just spent a half an hour picking fights with complete strangers.  She said, "That's not right.  You need to stop her!" 

When I refused to leave, they found a very nice charge nurse who took us to see someone who was able to help us.  Not the solution I was holding out for, but a compromise that will work.  

They are lucky.  I was one step away from leaving Mom there and seeing how long it would take them to find a solution. 

I wonder what she sees...

At least once a day, Mom puts her arms together, elbows to finger tips, palms upward.  She worriedly examines the entire length for about 10-15 seconds.  Eventually she nods her head, yes, puts her hands in her lap, and moves on. 


I'm not exactly sure what it is she is expecting to find, but I am glad that she is pleased with her findings. 

Another day in paradise...

Mom has been up since before 5 am.  I'm not sure how long before, I finally looked at the time at 5.  She was on a mission, a paranoid and angry mission. 

It's been just Mom and I since about 8.  She refused to eat her breakfast despite demanding to be fed and liking what I served her.  After trying for almost a half an hour to get her to eat, I finally fed her myself.  That's a first and not a welcome addition to our routine. But, she ate every bite, so I'll keep it in mind for the future.

Breakfast was over and I was sitting quietly working on my laptop.  She looked over and in a whiny voice pleaded, "Oh, please don't do that.  They will kill me."  I asked her what it was that I was doing that bothered her.  She looked surprised and said, "You're sitting quietly just like me."  I wanted to know what I was doing that was going to get her killed.  She said, "YOU"RE GOING TO KILL ME? WHY?"  I tried to calm her and tell her that I wasn't going to kill her.  "But, you said it!  Why would you want to kill me?"  Sobbing.  "You're going to kill me and I haven't even eaten in 3 days!" 

The morning moved on from there.  She only hit me once, so that's good.  She screamed  OUCH when she did it, so that's bad.  Since no one has called the police on me yet, I'm guessing the neighbors understand what is happening. 

We did a lot more of the same before the day care van arrived.  I thanked the driver for picking Mom up.  There's nothing new in that. I then apologized that she had to pick Mom up.  That's new. 

Party over here...

I recently requested that Mom be considered for 5 days at day care instead of the 3 that she is currently attending.  I just received word that her insurance company only approved 4.  That's not the 5 that I wanted but it is one more than we have now.  That sounds like a good reason for a party to me.  

Now, I just need to know who is bringing the cake? 

Looking back...

Alzheimer's became the focus of this blog almost 3 years ago. Sometimes, I go back and read my old posts. Some of them are funny and help me to see the lighter side of this disease. But, some of them are candid looks at this disease and the havoc it wreaks.  I have mixed emotions about all that I read...

-I am a mixture of extremes. Full of patience or intolerance. Lacking faith or faithful. Angry but able to see the funny. Selfless and selfish. Loving and hateful.  Hopeful and discouraged.  I cover it all.

-Little has changed for her. With minor exceptions, she is basically still in the same stage that she was in 2½ years ago. She is still combative, angry, delusional and negative. She has no humor, compassion, or empathy. She still is able to go to the bathroom herself. She still hasn't “eaten in 3 days” but fights about any food put in front of her. Her sleep habits are a little better, her delusions a little worse.

-I am coming to grips with the fact that I have little family left. My friends and extended family offer more support and love than my own brothers.  I am grateful for all that help, but hurt by my brothers.

-I have changed.  I am now always angry. I have more faith, but feel I am undeserving of help. I have no tolerance for anything that I consider a mistake that I've made. And everything is a mistake. I have exhausted all patience. When I consider the small amount of advancement that this disease has made I am unbelievably discouraged. I want my life, back but now feel it will never happen. I am past the point of digging my way out.

This blog has been a blessing in so many ways. I am able to say what I feel with few filters and that helps to relieve the stress.  But, reading the proof of decline- mine, not hers- is both discouraging and heartbreaking to me. I don't have another 2½ years left to give her.

Just drive...

I'm having a hard time pulling myself up today.  I just want to get in my car and drive.  Well, I want to, but I don't have the energy to do it.  Or the money.  Or the time.  But, I'd like to do it.  Just drive to wherever my car takes me.  Anywhere but here.

I hate feeling this low.  I look around me and I see people with real problems.  Real world problems.  In comparison, my problems seem so trivial that I feel guilty for not dragging myself out of here.  But, I'm here.  And, apparently, I plan on staying for awhile. 

How far can do you think I can drive and still be back by 3? 

Tick tock...

So much to do.
So much to get done.
I am counting the moments until she leaves.
Tick tock.
My list is getting longer.
I have to get things done.
I think the stress of it is killing me.
Tick tock.
So much to do.
Nobody knows I'm about to implode.
Nobody cares.
Tick tock.
Is the van here yet?
I have to get it all done.
I need to care.
Tick tock.
As soon as she leaves I'll start.
I just need to start.
Tick tock.
She's off to day care.
I can start my list.
I can get something done.
Tick tock.
Get up!
Do something.
Anything!
Tick tock.
I can't move.
Start your list.
Do something before it all falls apart.
Tick tock.
I don't care.
It's falling apart.
I DON'T CARE!
Tick tock.
BOOM!

Progress...

Today was a rough day for Mom.  She was very agitated, emotional and paranoid.  That's not a great combination.  For either of us. 

Here is a brief portion of the conversation we had while sitting in McDonald's inside Walmart today:

Me:  Are you finished eating?
Mom:  Why so you can get rid of me?
Me:  No.  We just need to get some food at the store.
Mom:  I'm not going with you.  (She starts gesturing for strangers to help her.)
Me:  Mom, please don't wave at them.
Mom:  They know me and they'll help me get away.
Me:  I thought you wanted to stay with me.
Mom:  I do.  Don't leave me here.
Me:  I won't.  I want you to come with me.
Mom:  Where?  I don't want to go with you.
Me:  I thought you wanted to be with me.
Mom:  I do.  But I'm not going with you.
Me:  Okay.  Where do you want to go?
Mom:  I just told you!
Me:  Can you show me?

Mom:  NO! I'm not going anywhere with you.  I want to be with you.
Me.  Okay.  We can stay here for awhile.
Mom:  Why so that you can dump me again?  Every time we come here you do this!
Me:  I'm going to dump this trash and then leave.  You can come if you want to.
Mom:  Okay.  But, I'm keeping my drink.

The interesting part of this conversation was that although we were attracting attention, I didn't let it or her get to me.  The woman 2 tables over was very judgmental in her glares.  I smiled and did what I had to do.  We did our shopping, checked out and made it to the car.  There in my car, I fell apart just a little bit.  But, it wasn't a meltdown, so I'm calling that progress. 

How do I look? Depends...

Oh, how I wish I'd had a camera with me this morning. It was a particularly frustrating (for both of us) episode of getting Mom dressed for the day. She understood my asking her to take her shoes off (she wears them non-stop, even with her pajamas). She didn't understand anything beyond that. She doesn't allow any help. I can't touch her or she screams that I'm hurting her. So, it all has to be done though verbal directions with gestures thrown in hoping that she'll understand what I'm saying. She didn't. After several minutes of haggling and frustrations, we finally had a clean palette that needed dressing.

I handed her some diap... errr, underwear and asked her to put them on. Like most mornings, she turned them over a few times trying to figure out which was the front. She finally got a look of recognition, so I looked away... she doesn't like people watching her. Who does, right? So, I look back and she has her arms though the leg holes and was pulling the underwear on like a shirt. I couldn't help it, I laughed. Unfortunately, I was laughing too hard to stop her. Her arms were extended straight up, the crotch of her panties stuck on the top of her head. I was laughing before, now I'm close to having a seizure. I looked away to get myself under control. I looked back to see her head and one arm poking out of one leg hole, her head cocked to make it fit. Her other arm is hanging out of the other hole. The waistband was pulled down over her chest. She crookedly looked at me and said, “Does this look okay?” 

But not today...

“How people treat you defines them. How you respond defines you.” – Mastin Kipp


Tonight, my daughters and I were talking and I wondered outloud, "If something were to happen and Grandma were to end up in the hospital, I'm not sure I would call your uncle."  Which progressed to, "I'm not even sure I would call him when she dies. I guess I might text him."

When did I become that person?  When did I turn into him?  A person who, in my opinion, is a selfish, egocentric (fill in an insulting name here).   I have spent the quiet hours since then thinking and reflecting on those feelings.  I believe in forgiveness and letting go of the anger.  I thought I had let go. But, if I can't forgive him, have I really released the anger?  The previous paragraph says that I haven't.   

As I was pondering all of this, I set up a what if checklist for myself.  If she's admitted to the hospital for something non-life threatening, then I don't have to call him.  If I admit her to a permanent facility, nope, that's no different than her being with me, I still don't have to call.  If her death is imminent, then I should call.  But why?  Why should I, when he hasn't picked up the phone and called even once in the last 15 months?  Why?  Because it is the decent and kind thing to do.  I just don't feel decent and kind towards him and that reflects on my character, not his. 

I will forgive him for walking away and placing the entire responsibility for all of this on me and my children. I will forgive him because that's what I do.  But, apparently, not today. 

Put your hands up...

I don't talk about this very much... I think I mentioned it once when I was tossing rolled up socks to try to get her to stop.  I don't discuss it because it is the thing that drives me the craziest and that simply disgusts me.  If it disgusts me to deal with, I'm sure it will disgust you to read about.  So, you are under no obligation to read any further. 

Mom picks.  She's done it for years, even before the diagnosis.  She used to pick everywhere she could reach but now just focuses on her legs.  It is a non-stop type of thing for her.  She does it as soon as she wakes up.  She does it as she falls asleep.  She does it in the car, on the couch, at the dinner table.  It is disgusting and it drives me crazier faster than anything she does.

The doctors all quote different causes and cures.  I've researched it and found that this occurs in a very small percentage of dementia patients.  Nothing they have given us has worked.  I've tried everything that I can think of to stop her habit.  But, it is at the point now that it is so ingrained in her activities that nothing works.  I spend my days begging, snapping, cajoling, distracting, yelling at, and it is all for nothing.  Her legs are a mass of wounds in various stages of healing.   Verbal cues from me might stop the activity for as long as it takes her to put her hands back down there. 

I am completely frustrated and lost as to how to help her to stop.  Today, I am using a water gun.  I spray her legs each time she reaches down.  It sounds cruel, I know.  But, what am I supposed to do?  Beyond the medical and topical "cures" that we've tried, I've also tried taping her pant legs closed, taping gloves onto her hands, the lobbing of rolled up socks, distracting with food, puzzles, sorting tasks, etc.  I am just so beyond frustrated.  On really bad days that I just can't handle it, I use earphones to block the sound (yes, I can hear it) and place whatever activity I am doing in my field of vision so that I can pretend she isn't doing it.  But, that results in more wounds and more to pick.  And the ever present probability of infection. 

Of all of the horrible things that the disease forces us to deal with, this is the hardest for me to handle.  Things like water guns and throwing socks do nothing to ease my guilt.  I just don't know what to do. 

As I point the water gun at her and she raises her hands to the sky in surrender, I can't help but see the metaphor of Alzheimer's robbing us all of our lives.

New behaviors...

I've been noticing some new behaviors with Mom.  They aren't anything earth shattering.  The progression of this disease is very slow with her, so earth shattering probably won't happen.

She is having more and more trouble understanding simple words and instructions.  For instance, if I'm trying to get her to stay somewhere, say, waiting while I get the car door open.  I usually get frustrated and finally give up I will say, "Stop!" she will usually say something like, "Chalk?  I didn't take it! That man took it!"

Getting her cleaned up and dressed in the morning has become time consuming.  As I ask her to remove her pants, she will stare at me.  As I continue to ask, trying to rephrase hoping for some recognition, she will do everything but take off her pants.  This morning as she showered, I talked her through each thing that she had to do. "Okay, Mom, you need to wash your legs."  "Mom, can you wash your legs?"  She moves the cloth to her shoulder.  "Mom, please wash your legs!"  She yells at me, "I am!"  I point to her legs and pull her hand down to her legs and say, "Your legs."  She will go right back to her shoulder.  It's frustrating.  For both of us.

I am sure the neighbors think that I am abusing her during these times.  If I touch her in any way while I am trying to guide her, she screams, "Ow!  That hurts!"  I know that reaction is part of the disease, I hope they do, as well. 

Some victims of this disease have traveled through the journey in a matter of months.  Others take as long as 20 years.  I shook my head "NO" as I wrote that last sentence.  Mom will be in the latter group, hopefully, not for 20 but it will be a long journey.  She was always a procrastinator, so why change now, right? 

My broken heart...

How to break my heart in one easy lesson.

On days that Mom is particularly agitated, I sit with her while I have my earphones on. We both get to listen to what we like, I enjoy the music and she enjoys complaining. We both come out winners. I am sharing that because I want you to understand how important my earphones are to my sanity... and her safety...lol. So, on to the point of this post...

Last night was a bad night. I felt like she was going to be getting up during the night, so I stayed up awhile hoping to head her off at the pass. I gave up at about 1 am and went to bed. I set my laptop on the stand next to the bed, my headphones on top of it. Having been up since 6 yesterday morning, I fell asleep immediately. At 1:15 she was standing in the doorway reciting a rather lengthy monologue about many things, but mostly that she was awake and wanted to know why we weren't as well. I got up and gave her a sleep supplement, got her back in bed and I went back to bed. She was up and down most of the rest of the night. I don't think she rested for longer than 30 minutes at a time. And the remainder of the time she was in my room talking and complaining. I ignored as best as I could, but ended up just dozing.

Fast forward to this morning. We got back from taking my youngest to school. I got Mom settled with her breakfast. As tired as I am, I knew it was going to be a long morning. I pulled out my laptop and my earphones... and saw this:

This is what a broken heart looks like. She took the ear covers off! The covers are gone!  The earphones still work but they are no longer noise canceling (so her droning makes it through) and they hurt! So, a long night and a long morning just got longer.  

Maybe she has them under lock and key somewhere. 

She has it all locked it up...

We lock the gates outside the front door with padlocks in case Mom is able to get out of the fortress, I mean house. When we left to take Katie to school this morning, I took the lock off and tossed it onto the swing that's right beside the gate. I was carrying things when we got back and forgot to lock everything back up. I just put Mom on the day care van, come back up to the house, and SHE STOLE THE LOCK AND THE KEY!

I'm laughing because I'm picturing the people at the day care walking up to a cabinet and asking, "When did we start locking up the diapers? Who has the key?"

To post or not to post...

I had some second thoughts about this entry.  This disease has so little regard for the dignity of its victims.  So, deciding to share stories that would be considered very personal for my mom are a tough call for me to make.  Ultimately, though, this blog is about my journey, selfish as that sounds.  And I promised myself at the very beginning that I would be honest and open about everything.  So, in deference to Mom's privacy and to your probable "I didn't need to know that" factor, I've decided to publish the story with a sanitized version.  Stop now if you don't like vivid mental pictures lingering in your subconscious (or conscious) mind for days.

My mother is a flasher. That's right, my 80 year old mother flashes anyone and anywhere. Without going into too much detail, apparently, the new bras that I bought her aren't comfortable. So, she lifts her shirt and adjusts “things” without notice or thought to her surroundings. Sometimes she has things covered and sometimes, not so much.  And, my exclaiming, “Mom!” in a loud voice, does not help matters. She then turns around, which increases her audience numbers, and says, “What?” As I try to pull her shirt down she yells, “Stop it! Those are mine and I need to fix them!” 

Not so bad, right?  Just be glad I left "parts" out and didn't take an actual picture.  I'm thoughtful like that.  

 

I know I shouldn't laugh...

She had asked me for scissors, nail clippers and a knife.  Then she went MacGyver on me.

Words...

The hardest part about writing for therapy, is when I have nothing to say.  I feel the desperate need to write, yet I have no words. Or worse, the words have been said until even I am tired of hearing them. Sometimes, they disguise themselves as tears and write their messages through the lines on my face, but there is no one to read them. 

No answers...

If she could, would she forgive me? Would she understand my frustration? Will I ever get this right? When I lose my patience, is she in there feeling my desperation? Does she feel desperate? Is there any part of her left that knows who I am and expects better of me?  Will I ever be the person that I thought I was?  Is she lonely?  Will I ever forgive myself?  Will I ever be able to think of her and smile? When will she finally find peace? When is enough, enough? 

Just me...

I'm having a difficult time today.  I've had a few good weeks with minimal tears.  But, today is just very emotional for me. 

Mom got up this morning in one of her extremely negative moods.  I add the extremely to my description because she is always negative.  There are a lot of things that wear me down in this situation, I could list them, but if I did it would just be a relisting of old complaints.  But, this constant negativity... arrrgh!

I think back to a blog I wrote, probably a couple of years ago, where I compared living with an Alzheimer's victim to someone following you around pounding a hammer.  Non-stop.  No rhythm.  Just pounding.  And that's what I'm feeling today. 

Everything is too tight, too loose, too hot, too cold.  The sun is in my eyes, Now I can't see.  I'm hungry.  I don't want this. You haven't even given me breakfast.  I already washed my hands, put clean clothes on, ate breakfast. 

Here's a question for you, have you ever seen someone eat a half a banana and take close to 50 bites?  It was turning brown before she finished and it was caked under her nails. 

After reading through this, nothing sounds out of the ordinary or even noteworthy.  I guess it's just me.  It's always just me.

A new friend...

Through a weird coincidence, I discovered a new friend today. A very good friend of mine, who works retail, was speaking to a customer who was also an Alzheimer's caregiver. In their conversation they discovered that they had someone in common... me. My friend, well, it's obvious how she knows me. The customer's name is Billie Jo and turns out she is a reader of this blog.

Some time ago, a mutual friend of Billie Jo's and mine suggested that we become Facebook friends because we were both Alzheimer's caregivers. But, that is as far as I thought it would go as I thought she was just being kind. I had no idea that she actually reads my blog.

Today, I messaged Billie Jo and we had a beautiful conversation. She is a kind woman who has offered me hope, a shoulder to lean on, prayers, and an ear to listen to me. What priceless gifts these are.

In our discussion she said this about Alzheimer's:

“You cant shower, grab your keys and run to the store for a quick gallon of milk when your out. You can't go to bed and get a nights sleep let alone a good one... You can't do anything that's normal.. A 5 minute break to regroup.. Forget that it's not going to happen. It's the simple things people take for granted and don't think twice about. Those are the luxuries we miss.. I had been using dish towels and wash rags and was asked by someone, " why don't you just use paper towels?" Well... I don't know when I'll be able to get out to the store to buy more...”

This description is just so perfect! It is all of the little things (and a LOT of big things) that can just make you feel so defeated and alone.

So, I found a new friend today. Someone who gets it. I am sorry that she had to travel this journey. I am thankful that her loved one is at peace. And I am grateful for her kindness and offer of understanding. Thank you, Billie Jo.

We are having a heat wave...

Mom and I just went to the grocery store.  I loaded the groceries into the car and then I got Mom locked, I mean buckled into the backseat and came around to get in the front.  As I buckled myself in and started the car she screams, "I'm floating!!"  I turned around and asked, "Why are you floating?"  "Because of the sweat that someone else told somebody else to throw on me.  Yuck!" 

Translation:  It's hot in here. 

Been here and done this...

I owe  two friends of mine HUGE apologies.  While their family members were going through the late stages of dementia, they had a horrible time feeding them.  I made a lot of useless suggestions.  I was at the point with Mom that I could always get her to eat.  It might not have been what I wanted her to eat, or even how, but she always eventually ate. 

I have just spent over 3 hours trying to get Mom to eat a very minimal amount of food.  I have a long time to go before she has even eaten the equivalent of a small breakfast.  It hasn't mattered what I've put in front of her or how I've presented it.  It wouldn't matter at this point if it came with a floor show and a new car.  She just doesn't want to eat.  This morning I served her some scrambled eggs with cheese, a sausage patty and a buttered biscuit with jelly.  All of which she likes and is easy to eat.  I even looked the other way when she chose to eat with her fingers.  She picked the cheese off the edges and refused to go any further.  I tried to help her and was met with a fist raised at me and "I don't need your help".  I gave up on that meal.  Among other things I've offered some tapioca with protein powder.  No go.  I've let it sit.  I've tried reverse psychology.  I've tried it all.

We are back to the eggs and biscuit.  She just will not eat.  I'm letting it go for now, but it's hard to do when she's complaining that she hasn't eaten in 3 days and I'm trying to starve her. 

So, to my friends who have been here and done this, my sincerest apologies that I didn't appreciate the difficulty of getting someone to eat.  You have my utmost respect. 

A good question...

 I was recently asked why I don't write as often as I used to. As I considered my answer, my friend's next comment surprised me, "I figured that when you don't write, things are going okay."  And, I can understand that assumption.  I often write when I am so overwhelmed that there is nothing I can do but write.  So, when it is quiet on the blog front, it seems like a lull in the storm.  Unfortunately, there are no lulls of any great duration.  10 minutes here.  20 minutes there.  But, mostly, she is just on.

I wish I could tell you that silence is a good sign.  I can't.  My silence is simply that I've said everything before.  I have written about her agitation, delusions, anger, occasional funny comments, eating habits, and anything else that drives me to write.  And, sometimes the only thing that drives me to write is desperation... that feeling that if I don't write, I will implode into nothingness.  

And, there are times that I feel so low that I can't put words to paper because it just confirms how lonely this job truly is.  Those feelings are rare.  Well, maybe not rare, but not frequent.

So, in answer to the question... I don't write often because I have nothing new to say.  But, thank you for asking and for caring.  That is what ultimately gets me through. 

Grrr or ouch...

Recently, I was asked what Mom says to me that hurts.  There are a lot of things that she says that push my buttons.  Words that hurt me?  Not as much.

Things that push my button are things like this morning, after a very bad night of her waking us several times an hour, she inferred that I had taken her boobs out the bottom of her bra. Yep.  When the rest of the world is sleeping, I sneak in and move an old woman's boobs around.  Or the times that she has griped and griped about lack of food, with my knowing that she had eaten very recently, only for her to refuse to eat when I get tired of the griping and I give her more food.  Then, as it is sitting in front of her uneaten, she gripes that no one will feed her.  There are more examples but you get the idea.

Things that get to my heart are much fewer and less frequent.  In fact, I'd say they are rare anymore.  I should point out that this journey teaches you to protect your heart.  When your own mother spews horrible accusations and disgusting names at you, you learn to build a barrier between her words and your feelings.  And, I've heard a lot of that.  Anymore, the only times that her words hurt are when they are said in front of strangers.  When she tells people that I abuse her or beat her, it hurts, not because she's saying them, but because someone might believe her. 

As I was rereading this I thought of something that does hurt, then and now.  Every so often, she will be very angry and hurt that I don't do enough for her, that I am selfish.  And that hurts to my soul.

45 minutes in bedlam...

I think it's time for another small peek into the life that is tainted by Alzheimer's.  It's a small peek because this was just the last 45 minutes.

Mom has been complaining that she's hungry and, say it with me, "I haven't eaten in the 3 days!"  She has been begging for dinner.  My oldest made dinner, club sandwiches, and brought her an easy version of it.  We all started eating and Mom immediately tried to give her food away.  She didn't want it, she wasn't hungry.  After several minutes of coaxing, arguing, threatening, bribing and then giving in, we took the plate away from her.  She got up and went to her room and closed the door.  Well, most of the way.

As the rest of us were eating, we heard a persistent knocking.  My daughter went and looked and could see Mom through the 2 inch crack in the door.  She was begging for someone to open the door.  I should mention that her door does not latch.  She still has a knob on both sides, but I took the mechanism out of it a couple of years ago.  She cannot lock herself into the room.  So, there she is begging for help.  She wasn't scared.  She just wanted out of the open door.

We continued eating our dinner.  In relative peace.  With no one yelling at us about our food.

It took her a couple of minutes, but she figured out how to walk out of the open door.  We had left her sandwich next to the couch in the living room.  She sat down and began to eat.  We were all busy with our own tasks at this point. I was writing this entry.  The doors were blocked and Mom was blocked into the limited areas that she is allowed wander.   

Fast forward 10 minutes to when it all got interesting, to my youngest running out and screaming, "Mom!  Grandma just flooded the bathroom!"  My mother had taken the plug out of the bathroom sink, shoved her turkey sandwich down the drain, turned on the water and dumped a bottle of cleaner into the mess.  The entire floor was under about an inch of water sudsy water. 

We cleaned it all up.  On the bright side, the baseboards are really clean.  The down side is that tomorrow I will have to get under the sink and lock the stopper back into the sink. 

As for tonight?  If she says one more word about being hungry, I shall have to lock her into her room, the one that can't be locked.

Run, Nancy, Run...

I'm in trouble tonight.  Mom just came home from day care.  She stepped off the van and into my arms to give me a huge bear hug.  You'd think that would be normal, but Mom has a no-touch policy.  She doesn't want help and she doesn't want to be touched.  So, a bear hug was extreme.  She then wanted to stop the driver from leaving because, "He's mine!  He's my family!"  Maria took that very well.  In fact, she laughed at me as she drove away. 

As I finally coaxed her into the house I could see that the agitation was going to continue.  She immediately picked a fight... with herself. She pleasantly asked,  "Are you going somewhere tonight?  And angrily responded, "Going somewhere?"  I just got here!  Don't start bugging me about leaving when I just sat down!"  

The dog just ran under the futon.  I wonder if I would fit under there, too. 

Keeping my mouth shut...

Tuesday at the Dementia support group, I commented that Mom had been sleeping well lately.  And she had.  I gave someone some advice about products that have worked or, at least, helped relax Mom.  And, there is where I went wrong.  We haven't had a good, solid night's sleep since.  And last night was the worst.

Mom went to bed about 9 and was quiet for a couple of hours.  I could still hear her having a conversation with someone, so I knew she wasn't asleep.  But, she was quiet and relaxed.  At about 11, she started getting up and moving around.  I had given her a sleeping pill the night before and I don't like her to have them on repeat nights, so, I gave her a supplement that usually works for her.

Ha!  Not last night.  She was up and wandering for most of the night.  I think the longest that she went without letting her presence be known to us was an hour.  She kept asking us if we were up/awake/hungry/busy.  She searched for her shoes.  She tried locked doors.  She flushed the toilet.  She ran water.  She tried to tuck us in.  She complained that the front door was open (we have a locked, solid metal security door that allows fresh air in while keeping us safe).  She told us to put our shoes on so that she could go have coffee.  She never did go to bed.  She was up and dressed by 6 and hasn't pooped out since.

I just hope that she will crash early and we will have a good night's sleep tonight... And  that I learn to keep my big mouth shut and not brag when she is sleeping well.  

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

The Burger KIng

My youngest and I ventured into "The Burger King" today.  I call it that because it is where it happened... where Mom had her meltdown.  There was a young man there that has waited on us a few times and he asked where Mom was.  I said, "You didn't hear about her last visit?"  He smiled a little, "No, I was here."
Oh... yea.  He was there.

He was actually very kind and told me that they didn't think a lot about it.  They knew it was uncomfortable for me but that they understood what was going on and would still welcome all of us back.  I was, and am, so impressed with the kindness shown by this business. 

But, I'm still not ready to take Mom back in to eat. 

Remembered priorities...

I was just sitting here tapping away on the laptop and Mom says, "Are you looking for a Hershey bar?"  I was a little surprised by the randomness (you'd think I would be over that) and told her no.  She looked a little disappointed and said, "Well, I'll help you find one if I can have some." 

I have 2 observations for that...
1-  It's nice that she still has a firm touch with some priorities in life.
2-  I need to go buy her a Hershey bar.

The little gifts...

Mom just brought me a piece of toilet paper...

Mom:  May I give you this?

No, thank you.

Mom:  You don't want it?

No, thank you.

Mom:  But, I got it especially for you.

That's nice, but, no thank you.

Mom:  It's my favorite!

Then put it in your pocket.

Mom:  Why would I want to keep a piece of toilet paper?


It's always interesting to see when and if reality might make an appearance. 

I had a dream...

I just had an interesting dream. I was cuddled up on the couch with a blanket, when Mom opened the door and allowed a bird to fly into the house. I couldn't see the bird (as birds are one of my biggest fears, I was hiding under my blanket, screaming) but by the sound of its flapping wings, I knew it was a raven. As I was screaming at Mom to get the bird out, it pooped all over me. It was in my hair and somehow even under the blanket. It was everywhere.

Nasty, right? While my dream self was a little grossed out and just a little irritated that the poop of one of my biggest fears had just landed on me, my subconscious self was relieved that I hadn't died!  I mean it was a very large bird trapped in the same room with me... and I didn't die!!!

I used an online dream dictionary to see what it said the appearance of a raven symbolized.  They are said to represent the purest truths of our subconsciousness. I don't know about that, I think a sparrow could have delivered the same message, with less mess.  

So, let's look at an amateur's attempt to interpret the dream. Here is my take... The bird is Alzheimer's. The crap represents the way I feel about life right now, thanks to Alzheimer's. Mom is the link between the bird, the crap, and me. Simple, right?

But, it's my reaction to the mess that I find the most interesting. The fact that I was relieved that I was only pooped on and that I survived is the most telling for me. There are days here in this house, when the stress and demands placed upon me are so overwhelming that I truly feel as if it is killing me, piece, by stressful piece. So, for my subconscious to tell me that I will survive this mess?  Yeah, that's my kind of dream. 

Math is math...

Most days, I am able to get out of bed with a somewhat positive attitude intact.  Not all, but most.  It lasts right up until the point that I just can't take another argument or word of negativity from Mom. 

Today, however, I woke up weepy and sad.  Then I took a 10 question little test about depression.  The questions themselves made me sad.  The answers made me cry.  It was sort of like balancing your checkbook when you're broke.  You already know you're broke but seeing it in black and white just makes it crystal clear.  You can't fool yourself into thinking it is better than it is.  The test said that it couldn't diagnose whether I am depressed, only a doctor can do that.  But, 10 questions, 8 answered with a yes.  Whether I'm balancing my checkbook or taking this test about depression, I can't argue with the math. 

Just different...

Mom has an unspoken agreement with the rest of the family... If she finds it, it is hers.  Some things are worth fighting for, like a phone, money or even underwear.  Some things are not, like old straws, pennies, or even an old Happy Meal toy.  But, some things are just fate, like Katie's shirt that Mom decided to wear to day care yesterday. 

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.