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.