How much more...

How much more?  How much more can we bear and still remain a family?  I'm being tested and I'm failing.  And I am angry!  So, very, very angry.  Why is doing the right thing deserve a punishment? Why is my effort  never enough? Why must my kids bear the brunt of my choices?  Everyday, I feel less and less of the person who I thought I was.  I feel my as if my very soul is being pulled out of me and it is thrown to the ground where it shatters and disappears like a puff of smoke.

I offer no thanks...

I had my children relatively late in life.  I am in my mid-50s, yet, I still have 2 children living at home. Today, I'm going to talk about my 13 year old.  She has been dealing with the effects of Alzheimer's most of her life.  She went from her grandma being her nanny, to being her grandmother's playmate, to being her own grandmother's babysitter.

For several years after Mom's diagnosis, Mom was no longer able to drive.  But, her condition wasn't bad enough that she had to stay home.  She used to walk a little more than a mile to her favorite coffee shop, sometimes a couple times a day.  Most days, I would drop her off on my way to work and she would walk home.  People along her route got to know her.  There were many times that I went out with Mom that strangers would come and give Mom a hug and say, "Hi, Andi!"  They would explain that Mom used to stop on her way home from the coffee shop and talk. 

During the Summers and on weekends, Mom would walk with Katie.  Katie loved it.  She became kind of a mascot to the people in the coffee shop.  But, that all stopped the day that I was at work and the phone rang.  There was a woman on the phone who said, "You don't know me, but I have your daughter."  Katie was 7.  You can imagine my panic. Mom had stopped at 7-11 and complained of chest pains.  This woman, who was a grade school teacher, took Katie by the hand and calmed her enough for Katie to tell her my phone number at work.  I thank God for that woman. 

So, Katie has seen a lot in her young life.  She remembers very few of the good times with her grandma. She mostly remembers cancelled plans and invitations that had to be declined.  She is very familiar with anger, frustration and yelling, she sees them all every day.  And, for that I am ashamed.

I often wonder how different this all would have turned out had I had my children at a younger age.  If I was the only one effected by my being a caretaker, would there be more patience?  Would the guilt be less if I knew that my kids were living  normal lives?  Would they see a mother who showed compassion to their grandmother?  Would they learn positive things from my example?

Obviously, these are useless questions.  I did have my kids late in life.  And they are here taking the brunt of this hideous disease with me.  Everyday.  And, it is changing us all.  And for that, I offer no thanks. 

The kindness of strangers...

We left the hospital last night with three prescriptions for Mom.  Two of them needed to be filled immediately.  Since it was after normal pharmacy hours, I had to drive to the only 24 hour pharmacy in the area, which is 20 minutes away.

So, while we were waiting in the car for them to be filled, we tried to distract Mom with some food and something to drink.  That worked for about 20 minutes.  At which point, Mom became progressively agitated and wanted to get out.  She began yelling and waving at people, trying to get them to "save" her.    She finally got a lady's attention that was parked a few spaces away.  Mom stuck her hand out the crack at the top of the window and grabbed the woman's hand and begged her to help her.  The woman talked very softly to Mom and rubbed her hand.  I quietly explained why Mom was upset.  The woman talked to her a moment longer and walked away.  As she drove in front of us, she gestured that she would be praying for us.

A few people waved and smiled at Mom as she gestured, trying to get their attention.  One woman came over and talked to Mom and held her hand.  She said that she was a doctor and knows that what we are doing, and what Mom is going through, is rough.  She diagnosed Mom's problem (accurately) and gave us a few suggestions to calm her.  While most of the suggestions rarely work for Mom, I was struck with the woman's kindness and willingness to help.

Often, I am irritated and frustrated with the judgements and criticism of strangers.  More often, like last night, I am impressed with their kindness and compassion.

Spy training...

Yesterday, I spent several hours in the ER with Mom.  She's okay now.  It was more of a precautionary visit.  But, I woke up this morning and realized that I didn't sit in that little cubicle, spending hours physically restraining Mom from removing the gadgets and gizmos from her arm, mentally counting the moments until I could write.  And, while it was a very stressful day, it wasn't anything that I couldn't handle without this release. 

The most interesting part of the day was training how to be a spy.  Mom was convinced that the shadows that she could see through the curtain, and the wheels visible under the curtain, all belonged to some elaborate spy network.  As I restrained her arm from tugging at the IV and would beg her to stop, she would whisper to be quiet or would admonish me not to "blow our cover".  If I tried to distract her with questions about her past, she would respond with, "you're one of them, aren't you?"  Each movement outside of the curtain would cause her oxygen monitored, glowing red finger, to point, and her to exclaim in a stage whisper, "There!  And there!  That one was a woman.  You can tell by the black shoes!"  Or any number of variations of that thought. 

This went on for several hours.  I have to say that my favorite portion of the training came when she decided that she wanted to leave.  She told me, "You go out there and draw their fire while I slip out the other way."  I guess it was to be expected.  We all know that the double-agent is always the first one down.

It feels wonderful...

For a caretaker, one of the most often heard pieces of advice is, "Take time for yourself.  Do something that you enjoy."  Well, I'm doing something for me today. 

As you all know, my oldest brother used to watch Mom for a few hours each week...  When it was convenient...  When nothing else was more important or sounded like more fun.  Last year, his birthday fell on his day to watch Mom.  I showed up, gave him a pretty cool gift, and then I took Mom with me.  I told him that no one should spend their birthday as a baby sitter for an angry, old woman.

I won't be completely petty and mention that I did not receive the same courtesy for my birthday.  But, I will mention that he has not done any care taking for Mom since she started day care in March.  He did watch Mom for a couple of hours so that Katie could have a family dinner out, for her birthday.  And I am grateful for that.

But, since May, I haven't heard one peep from him.  Not one.  Not a call to see how his mother is doing.  Not a text checking to see if we are alive.  Nothing. 

So, what am I doing for me?  Today is his birthday and I'm giving him what he gives to me.  Nothing.  I am not even texting a generic Happy Birthday.  So, I'm doing something for me.  It feels petty.  It feels wonderful. 

I'm hungry...

This is part of the conversation that Mom and I had immediately after her first lunch.

Mom:  I'm hungry.  I haven't eaten all day.  Are you trying to starve me?
Me:  You just ate 10 minutes ago. 
Mom:  I did NOT! 
Me:  I gave you rice, chicken, cheese and tomatoes.
Mom:  You did NOT!
Me:  Are you hungry?
Mom:  Are you deaf?
Me:  Apparently I'm stupid, too.
Mom:  Apparently.  I have not eaten all day.

I waited a few minutes.

Mom:  I'm hungry.  Are you trying to starve me again?
Me:  Do you want me to fix you something?
Mom:  Why?  So you can poison me? No, thank you.
Me: Okay.
Mom:  I'm hungry.  I haven't eaten today.
Me:  Yes, you have.
Mom:  I HAVE NOT!

I made her a turkey and cheese sandwich with some applesauce.

Me:  Mom?  Here's your food.
Mom:  I don't want that. I'm not hungry.
Me:  You need to sit down and eat it.
Mom:  I will NOT!
Me:  You will sit down and eat what you asked for.
Mom:  I will NOT!
Me:  Okay.  You don't have to eat it.  Just sit and drink your water.
Mom (as she tries to hand me her plate):  That man made this for you.  Where do you want me to put it?
Me:  Oh, you have no idea where I'd like you to put it.
Mom:  What?
Me:  I said to sit down and eat it.
Mom:  This crap?  I don't want this crap.
Me:  Then just sit and look at it.
Mom:  I'm hungry.  I haven't eaten today.  I've told you that 4 times and you don't care! 
Mom:  I've asked you four times what I should do with this!
Me:  Four times?
Mom: Yes. And I can prove it.
Me:  How can you prove it.
Mom:  That Easter guy came and took the tag off of these socks and he said so.
Me:  You win.

During the "discussion" she ate half the sandwich and all of the applesauce.

I'll take the wins where I can find them.  Now, I just have to find where she stashed the other half of the sandwich.

My Alzheimer's fairy tale...

Once upon a time, in a far away valley, beyond the farthest mountains and over the bluest sea, lived a woman, just an ordinary woman.  This woman had lived her life to the fullest.  She had married a good man.   The marriage brought many children into the world and it was good.

Now, this woman had seen her share of heartache.  She watched loved ones march off to war.  Some returned and there was joy.  Others did not, and there was sorrow.  After, many years, this kind old woman wept when her husband passed.  But, with the help of her children, she learned to find joy again.

Then, one beautiful Spring day, evil came to her small valley.  The evilness had a name.  It was called Alzheimer's.  Alzheimer's was in all of the medical text books. After all, it was just a disease.  But, it was so much more than just a disease. Its evilness was revealed each morning as her family saw what the thief had stolen from her as she slept.  At first it was a name here, the memory of a face there.  Soon, the woman forgot where she lived.  And the names of her children.  Eventually, she became a stranger to herself. 

But, through it all, the woman was kind and loving to those around her.  Even as the disease devastated her mind, and eventually her body, she had love and kindness in her heart.  Her kindness survived the disease and its wickedness. Her children gathered around her and cherished each day with her.  They knew that soon their dear mother would pass on and reach for the hand of their departed father.  And they would grieve for her while celebrating the woman that they knew. 

And kindness lived happily ever after. 

And then I scream...

I've long compared Mom's regression to a baby's progression.  Most days, mom's basic behaviors are about on par with a toddler's.  She has tunnel vision and can't see or hear anything out of that tunnel.  She doesn't like the food.  She is cranky when she doesn't get her way.  Everything else is better than what she has. 

But I started wondering...  What if, when we had toddlers, none of the accepted methods of teaching, coaching and disciplining worked?  We could no longer tap a hand reaching out to a hot stove.  A time out would be met with defiance and the inability to sit still.  Distraction and redirection only works for mere moments.  And what if, that toddler was as big as you are and ready to fight?  About everything.  Add to the desire to fight, the fact that the toddler is an adult and instinctively does not believe that you have the right to discipline, coach or teach.  What then? 

How do you get a 79 year old woman to recognize that climbing a chair and reaching into a moving ceiling fan, is not okay?  And, how many times do you have to talk her out of getting on that chair before you just let her do it?  That last question was facetious, but seriously, what do you do?  Distracting didn't work.  Simply ordering her to stop was met with more nastiness.  Removing the chairs was not an option.  Placing something out of her sight only makes her more determined.  She can't remember her name but she remembers that she wants to do something.  And she wanted the fan. She was obsessed with that fan.  I turned off the fan, that upset her more.  "He" told her that it had to be on. 

I finally did what I always do when she won't listen.  I screamed at her.  I told her to get down and leave it alone.  It worked after repeating it three times.  Loudly.  I don't want to yell.  But, that just seems to be the only thing that gets through.  I ask politely most times.  I try to redirect and distract.  I ask again.  And then I ask louder.  And then I yell. And then I scream.

I know there must be another way.  There has to be.   No one deserves to be yelled at like that.  And the guilt continues. 

More random thoughts...

More random thoughts...

-Today has been one of those days.  Mom has been so hyper and argumentative.  It has been almost a year since she cussed at me or called me a name.  Today I got it twice.  My favorite was when she was reaching in to Kylie's purse and I asked her to stop.  She looked at me with hatred in her eyes and said, "Well, you cheap b****."  Why, yes, I am.  Thank you for noticing. 

-Mom is back to complaining about lack of food.  As she is eating, she is telling anyone who will listen (and those of us who don't) that she hasn't had anything to eat.  She then lists all of the food that she hasn't had.

-I really do appreciate some of the differences that this new medicine has brought to Mom.  She is more alert and has more energy.  But, those two pluses seem to come with an awful lot of negatives.  I am still weighing the worth of the pill.  We shall see.

-Mom's appetite has picked up.  That's a good thing.  But, just as soon as we give her the food, she still won't eat it or she tries to give it away.  We are experimenting, each time someone gets up for themselves, they have to bring Mom something back from the kitchen.  It can be a sandwich, some yogurt, or even a cookie.  She needs all of the calories she can get. 

-She is back to raising fists at us.  She wants to hit us, especially me, but she holds herself back. I wish I thought the medical establishment would care if she actually hit me.

-I can handle the threats and the name calling.  But, the thing that has always pushed my buttons is when she tells me (or anyone who will listen) that I am hitting her.  Earlier, as I blocked her way into the kitchen, she said, "You just hit me four times!" No, I didn't but you can't convince her of anything.

-I am just so tired of it all. 

Unless...

New challenge.  Mom has been in a very touchy-feely mood the past couple of days.  And, that's okay.  Touching is important...

Unless it comes out of nowhere and you didn't even know she was close by.
Unless it is rubbing the hand that is holding the hamburger that you are currently taking a bite from. 
Unless it is on your bottom as you're waiting in line at the grocery store.
Unless it is when it is dark, you're asleep and she rubs your face and then mumbles "Oh, Okay." as she walks away.
Unless it is again dark, you're finally back to sleep, and she rubs your bare feet that were out of the blanket because they were hot.
Unless it is someone you just met... because strangers don't understand her touchy-feely mood. 

Yes, touching is good.  Unless...

Please, hear me...

The Lord is close to the brokenhearted and saves those who are crushed in spirit.  Psalms 34:18 

Please, hear me Lord. I feel so broken and alone.  I know you are near because your word has promised me.  Please, give me strength for one more day.  Guide me and show me the way.  I need Your Holy arm around me to guide me toYour way.  Forgive me my impatience and anger.  Help me to remember You in all that I do and say.  I thank you, Lord, for all that I have and for Your many blessings.  In the name of Jesus, who is my Savior, Amen.  

Missing pieces...

I misspoke.  I don't want to not do my blog.  Again, it is my sanity.  I just don't want to share it. So, one day after I said that I was quitting, I'm back.  Complaining and being negative.  But, it is all that  I have these days...

Mom went to day care again today.  The nurse called me while Mom was there.  She wanted me to be aware that Mom has lost 13 pounds in 6 months and they are concerned. Yep.  Me too. I just don't know what else to try.  I've tried the supplement drinks.  She won't drink the juice kinds.  And the milky type make her choke.  I feed her what seems like all day, every day. She wants her food right up until the time that she has it in her hands. I've tried adding extras to her food.  But, even the nurse said it is difficult to keep Mom focused while she is eating.

We stopped eating as a family several months ago.  Mom would constantly pick at the girls and generally make the dinner table a war zone.  The family dinners that I experienced as a child were always full of fighting and tension.  I promised myself that my kids would remember family time as a special time.  I will have to make more of an effort to sit and eat with Mom.  Eating with other people is supposed to help them focus on the food.  It's worth a try.  

I knew that older people tend to lose their sense of taste as the age.  What I didn't know is that their ability to taste sweet items is the last to leave them.  So, the nurse suggested letting Mom have more goodies while continuing to offer her nutritious meals and snacks.  She suggested items like puddings and yogurt.  She can still taste the sweet while getting some nutrition.

This is all so overwhelming to me.  I feel like I'm missing some pieces of a puzzle.  And, just as soon as I find one piece, two more go missing.  I continue to feel like a failure and as if everybody is completing the puzzle but me.  

I won't say anything at all...

Unless something miraculous, or extremely funny, happens, I will be taking a small break from publishing my blog,  I am boring myself with these negative posts.  And, the way things are going, it isn't going to get any better, anytime soon.

After about 10 days of  taking the new medicine, I am definitely seeing a difference in Mom's behavior.   But, it's not good.  Her behavior has gone back to a time that, frankly, is not a time that was pleasant the first go around.  She is extremely energetic.  You would think that would be a good thing.  But, combine it with stubbornness, the inability to comprehend simple direction, the need to be right, and a lot of anger, and you have a very volatile and unpleasant situation. 

She, again, argues about things that never happened.  She wants to go out to eat, or for coffee, constantly.    When I give in and take her out, she sobs that she wants to go home.  Or worse, she tells people that she needs help to get away from me.  She flags strangers down and gestures at me behind my back. She is back to trying to escape and figuring out locks. She is pouring water into the reservoir of the cat's dry food (that ruins 3 lbs of food each time).  She sneaks food out of the cupboards, contaminates it, and then puts it back in the cupboard.

I could go on, but I'm thinking that you're getting the idea.  I obviously considered that this new medication would not work.  It never occurred to me that we would go backwards and have to relive a horrible stage of this disease all over again.

So, a break it is.  I've written all of this before.  You've read it all before. So, if I can't say something nice, I won't say anything at all. 

A fair exchange...

I'm guardedly optimistic about this new medication.  It can take weeks to see the full effects of the drug.  So far, they have made a difference.  Mom seems to have reverted back several months in her behavior.  And that's a mixed bag.  On one hand, the delusions seem to have lessened.  She still is confused, but she's not seeing things that aren't there. 

But...  And this is a big but, she has reverted back to a place that was full of stubbornness and inflexibility.  As an example, today we went to Target.  Two weeks ago she would have been so agitated that we might have been able to pick up 2 items before we had to leave.  Today, she wasn't so much agitated as she was frustrated that we weren't doing what she wanted to do, whatever that was.  We do try to do things that she wants.  But, even when she picks something, by the time we are doing it, it's wrong.  When she is in that mood, she finds things to turn the focus to her.  "Oh, my leg hurts!" or "I need to leave.  They are waiting for me and I'll lose my job!"  Today it was a combination of these.  When I didn't immediately turn my focus to her, she raised her voice and said, "I need to go to the bathroom. NOW!"  So, I left my daughter in the dressing room, ran to the bathroom with Mom, where she firmly states, "I don't need to go and you can't make me."  Guess what?  After 20 minutes of arguing, it turned out she was right.  I couldn't make her. 

I don't want to make it sound all bad.  She has been calmer.  Her appetite has increased, a little.  She isn't as afraid.  She has started praying again. Although the other night she was praying to Santa Claus, but that's okay.  God knows her heart and hears her. 

I guess what I am seeing is a little clearer reflection of who she has always been.  Mom always has been stubborn.  The changes are subtle.  But, with them, I have found a little more patience.  Putting up with a little stubbornness is a fair exchange for that. 

Knocking wood...

I'm knocking wood that I'm not about to jinx this but...

Last night, Mom went to bed without a sleeping pill and slept the entire night.

This morning, I got up early just to check on her because she hadn't been up wandering in the pre-dawn hours.  She was quietly sitting in her room.  I went in and helped her dress.  She didn't argue about a single thing.  She was confused about why her pants had "two of these things" and a little surprised that I wanted her to put both of the pant legs on, but no arguing.  It was more a look of pity that I was so ignorant about these things.

I made her breakfast and she ate it.  That is really shocking. Most mornings, I mentally quote the Life cereal commercial, "She won't eat it, she hates everything."  This morning I was able to add, "She ATE it! Hey, Andy!" 

When the van arrived, she calmly followed me out and calmly got on and offered to buckle herself in.  The driver looked at me and grinned.  He said, "Did the new medicine kick in?" 

We shall see, with still crossed fingers, but we shall see.

Then you weren't listening...

I recently shared my day from Hell with all of you, courtesy of an L.A. County Hospital.  But I didn't share some of the more disturbing conversations that I had with the doctors.  There is one in particular that keeps running through my brain:

At one point, 3 doctors were in the room, explaining to little ole me, what their treatment plan was going to include.  One doctor said that she needed a complete battery of tests to determine the cause of her behavior.  Another said that it was obvious that she needed an anti-psychotic drug to help with her paranoia and delusions.  The last doctor said that he wanted to start her on some Alzheimer's specific drugs.  When he said that, my mouth dropped open.  He asked why I was surprised.  I asked him, "Don't those drugs just maintain the stage that she is at and do nothing to improve her condition?"  Yes, that's true. As I continued to block the doorway that Mom was trying to get her pathetically thin body through, I asked, "Why do you want to maintain THIS?"  His answer was, I kid you not, "Because medication will give her a quality of life."  I became almost as agitated as Mom when I asked, "Doctor? Where do you see any quality of life in her?  What part of this situation should we maintain?  Why can't we allow her to die with the little dignity that she has left?"  I could tell he didn't get it.  None of them got it.

Later, when I was alone with the doctor who actually saw Mom as a person, I asked her, "Do you understand the point I was trying to make in not wanting to give Mom a drug that maintains this disease and prolongs her misery?"  Her answer was, "What we heard is that you are at the end of your rope and that we need to find you the help that you need."  Really?  That's what you heard?  Well, then you were not listening.

Here comes trouble...

Okay.  Before you read this, it comes with a warning:  Humor is in the eye of the caretaker.  Read with an open mind.

Many years ago, I had a Siamese cat. His name was Trouble and he was an indoor/outdoor cat.  At the end of a very long night at work, I came home to find Trouble very angry with me that he was stuck outside.  Very angry.  I let him in, fed him and then fixed myself some dinner.  I plopped down in front of the TV to unwind.  Trouble proceeded to yell at me about being left alone for the day.  And if you have ever heard a ticked Siamese, you know they can yell.  After listening for awhile, I reached down and picked him up, hoping that he would quiet down.  As I pet him, my hand came away covered in blood.  Long story, even longer, he had been in a fight.  We found a vet who would see us at midnight on a Friday.  They did surgery and put a pin in his hind leg.  Trouble healed well and you could never see any sign that he had ever been hurt.  Unless I ticked him off.  And then that ornery old cat would limp like you've never seen a cat limp. He would actually drag that hind leg as he walked.  And he would keep limping until he got what he wanted. 

Fast forward to the point of this story.  Mom feels great all of the time.  Seriously.  She's healthy.  No major issues.  But, do not ignore her or deny her something that she wants.  If you do not give her what she feels that she deserves, Trouble's limp reappears.  She moves like she's on her death bed. She does everything short of throwing her wrist to her forehead and moan. Oh, wait.  Yeah, she adds that sometimes.  But, just as soon as you give her whatever it was that she wanted,  the pain magically disappears.  I just hope that she continues using the cat box as well as Trouble did. 

There is still hope...

I finally gave Mom the new prescription.  I've had it since Monday evening but, I just couldn't bring myself to give it to her.  I've had a few reasons for the hesitation. 

The first being that I didn't want to give her something new and then send her off to Day Care.  I wanted to be present to see how she reacted to it.  I didn't feel it would be fair for the Day Care to be the guinea pig if she didn't react well.  So, that meant that I had to wait until, at least, Thursday night for the first dose.

The second reason was that Mom has been relatively mellow for the first part of the week.   She was comparatively calm and did most things without an argument.  I didn't want to fix something that wasn't broken.

The final reason was the fact that I was scared.   I have been hoping for so long that this will make our lives easier and less stress filled.  But, this medication does not work for everyone.  What if I gave it to her and it didn't work or it aggravated her condition?  What would I pin my hopes on then? 

So, yesterday, she was done with Day Care for the next 4 days.  The mellowness had passed with a bang.  But, mostly, I know that this situation  is like the lottery, you can't win if you don't play.  So, I gave her the first dose last night.  The only difference that I saw was that it took her longer to settle down for the evening.  I can't say that she was more agitated.  But, I can say that I did not see a calming effect. 

Today is a new day.  I have given her the second dose and will cross my fingers, say my prayers and even send up smoke signals with good thoughts.  There is still hope.