Another episode of random thoughts...

-Exhaustion is my new, old friend.  Nothing is keeping Mom asleep now.  All previous methods are useless.  I am considering an alternate form of therapy, that frankly, would have shocked the Hell out of me a few years ago. But, research (done during the light of day) tells me that it works and it helps.  So, I'm in.

-The exhaustion is making me more emotional than usual.  Sleeping 2 hours here, 90 minutes there, all with one ear on the alert is not conducive to good moods. I don't remember what it is to not be tired. 

-With all of the gadgets, furniture arrangements and special locks around here, the house feels like an obstacle course.  And now add the entire bathroom to the list of things that must be locked at all times.  Mom uses the toilet as a trash can.  As a result, I have been plunging the toilet more often than I ever want to plunge.  Yesterday, I plunged.  And plunged.  I'm still plunging.  At one point, I poured a bubbly concoction into the bowl and let it sit.  This is what floated up to the top (the Qtip is for size reference):

-Christmas is upon us and even though Mom sings with the carols, she has no comprehension that the Holy day is here.  She always made the day special for us and I'm trying to do the same for her.  The thief that is Alzheimer's will surely make that impossible. 

The thief...

Mom had a good day.  She found a pen, got out a word search book and looked at it. Often. She would flip through the pages and look.  But, she couldn't quite remember what she was supposed to do.  It was the first time in at least a year that she even showed interest in it. 

Unfortunately, tonight she is counting the tissues in her purse, taking them out and folding them, and then putting them back in.  She then opens her purse and sobs when she finds them there. Apparently, someone has stolen the rubber bands that were supposed to be holding the tissues together. 

This disease is so fickle.  Through the heartbreak, I am fascinated by how quickly it gives and then steals back. 

FAFFL #2...

Mom gave me another FAFFL (file away for laughing later) moment. She was very restless last night. Up and down.  She would sleep for an hour and then get up and start getting ready for work/school/ice skating/whatever.  Because of her wanderings, I have pushed the couches in the living room together at an angle to block Mom from going into the rest of the house.  I sleep with my head at the apex of the couches so that I will know if she tries to escape.

Anyway, Mom finally quieted down  at about 1 am.  I didn't  believe she was truly out, so, I laid there watching for her for another hour or so. I must have dozed off because I woke up at 3:20 with a 79 year old butt in my face as she was attempting to climb over me to get out of the house. If you've ever had a 79 year old butt in your face at 3:20 in the morning, you'll know that even in the light of day, it still isn't funny. But, I don't mind if you laugh.  If it happened to you, I would laugh.

But, what was filed away for laughing later (because I was too tired to see the humor) was that every time she got up, I would take her back to bed, and she would come up really close to my face and gesture at me to be quiet with a finger over her mouth and whisper, "It's okay. I don't have to go to bed because I'm not really here."  So, apparently, I now have a Mother who acts like a toddler that's been drinking. 

Words...

During the really bad times with Mom, I turn to words to calm me.  And today has been a rather bad day.  But, there are no words today.  As bad as it is, as bad as it will probably get with Mom, I cannot write anything of meaning.  Today I received the gift of perspective.

Unfortunately, perspective can arrive in very sad and desperate packages.  Mine arrived amid tears and heartbreak... A very dear friend is having the worst day any parent can have.  She is losing her child. 

So, my words, when I can find them, will be for her. 

You can't make this up...

Warning:  The following language is how we actually talk around here.  Advance at your own risk. 

Scene:  I'm sitting on the couch.  Mom is standing over me farting.  A lot.

Me:  Mom, you need to go do that in the bathroom.

Mom:  What?  I'm not doing anything.

Me:  You're farting.  You need to go use the bathroom.

Mom:  No, I don't.  They told me to do it for you.

Me:  MOM.  You're farting in my face.  Go to the bathroom!

Mom:  NO!  They told me to do it for you!

Me:  Mom, you're farting!

Mom:  I know that!  The only way I'm going to the bathroom is if you come with me.  They told me I had to do it for you! 

Me:  That's disgusting.

Mom:  Yep.  That's why it's for you.

Nice...

I just posted this on my Facebook page:  "Some people suck the nice right out of you."  After more than 12 hours of Mom's non-stop negativity and finally screaming at her to just shut up, I want to say that it is true.  

But, wait.  Can someone change who you truly are?  I always go back to something that I heard Oprah say.  I'm paraphrasing, but she said that if you have to try to be nice, then you aren't truly nice.  So, if you carry that a step or two further, if the nice can be sucked out of you, were you truly nice in the first place?  I'm guessing no.  

But, this discussion will have to wait for another day.  I'm not in the mood to be philosophical about this.   All I know for sure is that my nice has done been sucked.

What works now...

What a beautiful sound.  I turned on a traditional Christmas station on Pandora last night.  It was another attempt to soothe Mom with music.  So many of these attempts have failed and I truly didn't expect any success this time.  But, she sang.  She hummed.  She smiled.  She even thanked me several times throughout the evening for playing the music.  It truly was a lovely evening for which I will always be grateful.

This morning she awoke just as angry as usual.  She is furious that I haven't fed her (I have...twice.).  She wants to know where her car is... it's been gone since her diagnosis 7 years ago.  I have turned the music back on.  She has alternated between being angry at "that noise" and singing with it.  As a song ends she demands food and the location of her car.

I once read that if you've met one Alzheimer's victim, umm, patient, that you've met one Alzheimer's patient.   Meaning that every victim of the disease reacts to it in their own way.  But, I take it a little further to include that what works right now for your loved one, works right now.  It might always work, but chances are it will never work again. The challenge is finding what works now.

During the writing of this entry, I have determined that last night was a fluke that may or may not repeat itself.  So, I will continue playing the music... into noise cancelling earphones, firmly attached to my head. That is what is working now.

Appetite restored...

Yesterday, Mom ate eleven meals.  I'm really not complaining.  I know that it is better than the alternative.  But, ELEVEN meals.  She had four breakfasts by 10 am.  Just as soon as she finished each one, and occasionally while she was still eating, she complained that she was hungry.  So, I fed her. I'm not even talking about the snacks that she ate, I'm talking meals.  Thank goodness for leftovers.

Even with 11 meals, she still wouldn't go to bed because she was hungry.  This morning she woke up hungry.  It's 2 pm and she's only eaten 4 meals.  But, she should be hungry anytime and I'm ahead of her... I have a meal ready for her.

I would be a completely happy camper if I could just change two things...

-when she's not actually in the middle of a meal, I would be happy if she didn't accuse me of starving her.  Having waited on her almost once an hour, it's just a tad irritating for her to say, "You want me to die.  You haven't fed me in three days."

-when she is eating practically non-stop, it would be nice if the first words, after the first bite, weren't, "This is too salty/hot/nasty/cold/much."

Okay, so I'm complaining.  But, just a little. 

A fun family game...

If you're like us, you like spending family time together.  Here's a fun project the whole family can enjoy.  Make some Rum Toddies (with a LOT of rum). Make it a big batch, the kids will want some too. Cut out this conversation (I left convenient breaks between the lines for easy cutting.) Toss the lines into a big bowl, mix them up, and pull them out, one at a time. Try experimenting with different levels of aggravation in your voices. The fun part of this game is that you can repeat the steps over and over for unending fun.

Mom: Did you want to go out for awhile?

Me: We just got back.

Mom: We could go get some coffee. I haven't gone out in days.

Me: Mom, we just got back. I just took you out.

Mom: I haven't been anywhere.

Me: Ok.

Mom: So, do you want to go out?

Me: No, thank you.

Mom: I'd really like to go out.

Me: Yeah, I got that.

Mom: So, do you want to go out?

Me: * ignoring her *

Mom: Maybe I'll take a walk.

Me: Ok.

Mom: So, do you want to go out?

Me: No, thank you.

Mom: Maybe I need to walk. I'll go get some coffee. Would you like to walk with me? If you walk with me, we can ride.

Me: * ignoring her *

Mom: Yep, I think I'll just walk. Wanna walk with me?

Me: No, thank you.

Mom: Well, I guess I better get my stuff together. It's a beautiful day for a walk.

Me: Yep, it's pouring rain. Perfect day for a walk.

Mom: Then you'll walk with me?

Me: Nope.

Mom: I'm just going to go myself then.

Me: Ok.

Mom: Just so you know, if I go by myself I'm going to find myself a man.

Me: Good.

Mom: I'll bring him home, too. And, he'll think you're just as mean as I do.

Me: Ok.

* Quiet for a few seconds *

Mom: Do you want to go for some coffee?

It's our favorite game. I hope you enjoy it, too. ;)

My family...

Lately, I have been thinking a lot about family.  I would like to think that it is simply the time of year that, traditionally, we consider and remember our families.  But, I'm sure most of the thoughts were brought about by the deterioration of my own family.  The situation with Mom over the last few years has forced me to realize that of the unit that my siblings and I formed, wasn't as strong as I believed it to be.  I venture into this holiday season with the memories of two brothers who have passed, a brother who would rather be anywhere but here, and another brother who has virtually walked away from the unit and our mother.  I miss them all desperately. 

But, I am forced to also consider the amazing family that I am blessed with...

-My daughters, who I wish could be anywhere but here and living this Hell with me.  But, I am so very thankful that they are here, loving and supporting me everyday. They are my rocks.
-The cousin who unfailingly sends me a card of support, offering words of understanding when I need them most. Who always "gets it".
-The uncle who texts me a couple of times a week with a smile and a good wish, who gives me the best hugs when I see him.
-The cousin who has her own difficulties, who offers me unconditional support, who would be here in a heartbeat if were to only ask, who always includes my youngest daughter in fun activities and allows her a safe place to get away and to be a child.
-The aunt who has sent me money just because she loves her sister AND me, who offers me support and understanding.
-The ones who offer encouraging words and who read my words without judgement.  The ones who, I KNOW would be here in the trenches with me if they could be.

 But, I have another, equally important family.  They are the friends...

-The ones who I haven't seen in many years, who by the wonder of Facebook, have come into my life and shown me kindness, understanding and even escapes from my daily challenges. 
-The ones whom I have never met, but I can privately share the ugliest parts of my life and they respond with compassion, suggestions that come from experience, and even laughter.  Lots of laughter.
-The childhood friends who always have a positive word and a hug when I need it.
-The one who has her own demons but never fails to help me fight mine. 

If you are reading this, you are my family. This Thanksgiving, while I mourn the loss of my traditional family, I rejoice in the people who are here for me.  Everyday.  As I sit down to our quiet Thanksgiving dinner, please know that I will be saying a prayer of gratitude for you, my family, as I do everyday.

Pity party...

Continue reading only if you don't mind a published pity party.

I am just feeling so very overwhelmed. Up until 3 years ago, I was on top of my game. I had a job and a career that, while I wasn't rolling in the money, I was blessed to be able to provide for my family. We didn't need anything. We were comfortable. I was a single mom who moved my family in with my mother to help her in the early stages of her disease. Of course, there were conflicts and problems, that's part of life. But, we were happy.

Then almost 3 years ago, the economy forced me out of my job. I looked at it as a blessing because the timing coincided with my Mom's condition worsening. But, it also began a series of situations that began testing my faith and the very reality of who I am.

Now, I feel as if each test that I have gotten through, I am handed another. Sort of, “Well, you came out of that one smiling, try this... Whack!” And, each challenge is harder to smile through. I am tired with no rest in sight. I am broke and falling deeper into the money pit. I am sick with no healthcare and a system that doesn't work. I am angry and becoming angrier. I am alone.

Yesterday, my car was ransacked and several items were taken. But, worse, the jerk then stole my daughter's car. I feel like I have the proverbial “kick me” sign on my back. And, by association, my children are being kicked, as well. I can't help but wonder what I did that was so horrible that this is my payback.

I know that those items and the car are just things. I know that. I am grateful that no one was hurt. I am grateful for so much. But, at what point is it okay to just say, “Screw it”?

Published pity party is over. I will now continue in private. 

I did not want to be right...

I knew this day was coming, but it's not a gloating, "I told you so" type of knowing.  It's more of a "what's next" type of knowing. explain. 

Mom has been angrier than usual lately.  Everything from taking a pill (I'm trying to kill her) to taking a shower (she already did that) is grounds for an argument.  And, sometimes, a physical argument.  Mom had to take a shower this morning.  Without, going into too much detail, she had to take one.  After, asking her politely, trying to bribe her, coax her, trick her, threaten her, I ended up forcing her to take the darn thing.  It turned into a mini brawl that included arm holds and choking (towards me, not her).  Once I got her in, she showered with minimal assistance. 

She calmed down while she ate her breakfast.  But, she was itching to go.  Just as soon as the van arrived to pick her up, she became argumentative and nasty again.  I had to get her seated because she was so angry. Her day was okay at the day care, until she had to ride the van again.  The driver called and said that they were running late because Mom "threw a fit".  By the time they arrived here, Mom refused to get off the van. 

She just fights everything. If you want her to go, she wants to stay.  If she's hungry and you give her food, she doesn't want it and refuses to eat it.  I am sure that it's her final attempt to control a life that has become chaotic and uncontrollable.

The van driver asked me what steps were they allowed to take to calm Mom.  As I'm concerned about their safety, I told her that, yes, they could restrain Mom. I felt okay with my answer, because I trust these people.  Nothing in the facility is done behind closed doors.  The clients are always in full view of anyone and everyone.  Just from my personal observation, these people have so much more compassion and patience than I do.  And, they are aware that restraint is the final choice for Mom.  But, what a choice.

I will be trying to contact Mom's memory doctor tomorrow.  Between the lack of sleep (mine) and the aggression, something needs to be done. I just hope that, at this point, there is something that can be done. I shudder and cry at the possibility that the day care will be forced to turn her away. 

Yes, I knew this day was coming, I just didn't want to be right. 

I've seen fire...

Mom was on fire today.  The van had to pull over before they even got off of our street.  She raised her fist to the driver on the way home.  When the driver raised her own hands in a demonstration of submission to Mom, Mom started screaming that the woman hurt her. 

Mom's been home for maybe 15 minutes and she's picked a few fights with me. She was furious that the mailbox was attached to the front of the house.  She has accused me of stealing her jewelry, hitting her in the nose, and breaking her arm.  She's slapped Katie and has dumped the food that we gave her. 

Right now, she is on a timeout in her room.  And, just like when I used to send my kids to their rooms, it's not so much about punishing them, but more giving me a break before I completely lose my temper. 

As I am writing this, Fire and Rain came on Pandora:

"Won't you look down upon me, Jesus
You've got to help me make a stand
You've just got to see me through another day
My body's aching and my time is at hand
I won't make it any other way."
 





 

Sign language...

I am sitting here trying not to laugh.  Loudly.  Mom is sitting across the room frantically gesturing to me.  She wants me to leave with her, but leave my daughter here.  The problem is, my daughter can see her. Very clearly  Somehow, she thinks if she waves her arms above her head, violently shakes her hands back and forth while trying to get my attention, then no one else in the room can see her. When she thinks I am looking, she holds up one hand as a shield and points to the door with her other hand.  Her movements are so frantic, you can actually hear them!

I am doing my best to ignore her but each time my eyes venture to the left side of the computer screen the movements increase.  As they travel to the right, she slows down.  So, now it's a game for me.  Mom is being controlled and I'm the remote control.   Oh, the possibilities.

It's the little things...

I usually dress Mom each morning. Most days I simply have to talk her through each step.I usually I have to actually show her that pants are not a shirt and socks are not her underwear. Sometimes, I have to physically help her with each item. It's easiest to dress her after a shower because I simply have to lay out the clean clothes while hiding everything else.

Today was a good day. She dressed herself. Head to toe, she had everything in the right place. So, out we went to do errands. We were gone about 3 hours. As I was unlocking the front door, I looked down and saw this:  

My dad would have said, "I'll bet she has another pair just like 'em at home."

Where is the hope...

Every now and then, I go back and read my previous blog entries.  Sometimes, I don't recognize my own words.  Most of the time, the words take me back to the very feelings that I had while writing.  A couple have made me laugh.  But, overall, I have such a profound feeling of sadness as I read.  Especially, the recent posts, I sound so sad and as if I feel hopeless. 

Early entries didn't shy away from the deep feelings, no matter how negative.  But, they were usually injected with a just a bit of hope.  That hope has been missing recently.  Both, in my words and in my life.  The desperation is so real now.  I shame myself each time I wonder when this journey is going to be over,  I pray for it to be over.  Shame because I am wishing for my mother's life to end.  I can't ask how long must she be forced to live like this, she is not living.  Instead I must ask how long must she suffer?  And, selfishly, how long must we?

But, the biggest shame of all comes from the jealousy I feel when I hear of a victim of this disease finally being given peace.  Yes, I am happy that their fight is over and they are whole before their Father.  But, I am also jealous that their caregivers are at peace, as well.  Through the pain of loss, there has to be some measure of peace.  And that is the hope of this entry. 

The content of my character...

“The content of your character is your choice. Day by day, what you choose, what you think and what you do, is what you become.” - Heraclitus

My life has changed a great deal since I made the choice to move my family in here with Mom.  A great deal.  But, one of the biggest changes, is also the one that is most difficult for me to accept: I am nowhere close to the person that I thought I was.

I've always considered myself to be a kind, openhearted and compassionate person. But, each day that I move further into this journey, I realize how far away from that perception of me, that I am traveling. And it hurts. Kindness is not filled with hate. Open hearts do not react with resentment. And compassion does not respond with anger. Yet, hate, resentment and anger describe me far better. Each day that I respond negatively, to the challenges of this situation, is a day that I choose to do so. My choices have led me to what I have become.

I am trying...

This will be one of my entries that I won't share a link for people to come read it.  I will write it because I have to, because the words are screaming for release.  But, I can't handle the people who love me, feeling frustrated that they can't help.  It reminds me too much of the people who were supposed to love me who won't. 

This morning Mom woke at 4:30 with the "everyone needs to be up" attitude.  It progressed to a stubborn and everyone is evil attitude.  She refused to leave the house so that I could take my youngest to school.  I offered her everything I could think of to get her into the car. I kept in mind, all of the advice that the doctor shared with me yesterday.  No, Doctor, bribery did not work.  I tried distracting her, "Oh look! There's a squirrel!".  Yeah, that didn't work either.  I handed the reins to Katie because that's what the doctor said to do.  Mom threatened Katie.  I grabbed the reins and threatened to leave her by herself if she didn't get into the car.  She got into the car with some subtle dragging by me. 

After I dropped Katie at school and drove home, Mom refused to get out of the car.  I went along because the doctor said not to argue with her.  I took her to the coffee shop that she used to visit every morning for over 10 years.  I had to bribe her into the building.  She immediately accused the waitress (loudly) of poisoning people  She wouldn't sit down because there was "evil" in the building.  I calmed her, sat down and ordered her coffee.  She tasted it and yelled, "This is nasty!  It tastes like SH**!"  She then began pointing to the other customers and saying that they were all evil and they were plotting against her.  I left a few dollars on the table and we left.

She demanded that I take her home, where she, again, refused to get out of the car.  I asked, and, yes, she'd like to go to the store with me.  The entire way to the market, she screamed at me from the back seat that I was going the wrong way.  The signs told her that I was in the wrong lanes.  At signals, she pounded on the window and was screaming that I was stealing her.  When we got to the store, she refused to get out of the car. She wasn't going into a place where they did horrible things to people. I tried bribery.  I tried distraction.  I tried patience.  I tried.  We left.

On the way home, again, the screams that I was going the wrong way.  That I was going to kill her.  That I am evil and she wants to go home.  We passed a store that sells tires.  She said, "I like that store.  I want to go there."  I told her that I didn't need anything from that store.  She took off the seat belt and tried to get out of the moving car.  The door had the grandma lock activated, so, she didn't get out.  I turned the radio up to drown out the screams.

When we arrived home, she came in without incident.  She had breakfast of eggs, sausage and biscuit.  Within 10 minutes she was demanding that I feed her.  After all, she hadn't eaten in 3 days.  I gave her a pudding cup and she promptly yelled at me that it was too much.  She couldn't eat all of that.  As she ate it, she nastily told me that I was a bad person for trying to starve her.  That was about 10 minutes ago.  She's now telling me that she is hungry and hasn't eaten in 3 days.  Why won't I take her out of the house? Why is she always stuck here with me? 

It's 10 o'clock in the morning.  Mom has been up 5 and a half hours.  I just keep wondering how much the doctor would have put up with before he found a medicine that works. 

I know that it is past time to institutionalize her.  I KNOW.  But, there are more things involved than deciding that it's time.  The doctor said that I'm at my saturation point.  Yes, I am.  That occurred almost 2 years ago.  But, I can't make the system work for me.  I can't force it to make the right decisions.  Until it does, I am here and I am trying. 

Almost waste of a day...

Back in July, I wrote about our visit to the Memory Clinic at a hospital in L.A.  It was one of the worst days that I had ever had.  Well, today, we headed back for a follow-up... same clinic, same doctor.  But, this time I wasn't expecting compassion or even common courtesy.  In fact, I was expecting to put that arrogant doctor in his place.  And, while the visit wasn't anywhere near one of my worst days, it certainly wasn't a good visit.  I had to take my youngest daughter with me and she thinks that he calmed his attitude because there was a child present.  I don't know if that was true.  But, at least he tried to show some compassion this time.  It didn't ring true simply because I've seen him before.

The visit was more about my behavior than Mom's.  And that's okay.  There really isn't anything left to do to change Mom's behavior.  So, these are the things that he wants me to work on:

-I can't argue or disagree with Mom in any way.  She's delusional and I can't win with someone who has no reality.  I get that.  I truly do. But, he had no answer for how I respond to her when the delusion changes within seconds.  Whether I agree or not, Mom is agitated.  In fact, it can be worse if I do agree. He just spouted off with why his method will work. His method used to work.

-I am supposed to use bribery.  Yep, I'm supposed to bribe someone who doesn't have a measurable attention span.  How do I bribe her when she cannot remember from one moment to the next what she is even working towards?  Bribery stopped working about 2 years ago. 

-And my favorite.  If you've read many of my recent posts, you know that Mom is not sleeping well.  She takes her sleeping pill, it takes a lot of patience to even get her to sleep and then she's up wandering within an hour or two.  She rarely goes back to sleep.  So, I asked the doctor for an alternative to the sleeping pill that she has been taking.  His answer?  Wean her off of it and give her nothing.  Yep.  This woman, who is the late stage of Alzheimer's, the same Alzheimer's that disrupts sleep, is suppose to have nothing to help her or us.  I am to let him know at the next visit, 3 months from now, how it goes.  Only when I told him that refuse to go 3 months without a decent night's sleep did he say that I can call in a month.  When I asked if he was willing to go even a month without sleep, he said that I had to try it for 2 weeks and then call him.  I will give it 2 weeks, and I sincerely hope he's right and that it works.  But, if it doesn't I will be calling the morning of the 15th day. 

As I said, he did try to show some compassion.  He is concerned about my health.  He gave me some phone numbers of people who can help me.  And he recommended a book to read.  So, I'm going to call this visit an almost waste of a day.  Almost.




http://nancysnotesonnothing.blogspot.com/2013/07/Alzheimers-it-is-no-okay.html

I'm not holding my breath...

Most days, being a caregiver to a family member with Alzheimer's, are stressful. But, some days, some days, are Hell. There are no good days anymore. But, days like today are just unbearable.

Today was one of the bad ones. It was one of the days that I think I hate myself more than I hate her. She is almost always uncooperative and mean, but today we went to new extremes. She was not happy with anything today. And, the whining. Oh my goodness, the whining. It seemed, no, it was, non-stop. And, I lost all patience by mid-afternoon, hence the self-hatred. Even my youngest daughter, who had been at school for most of the day, commented, “What's wrong with Grandma today?”

It's now after 10 and the guilt is eating at me. I am so obviously at the end of my tolerance (screaming and yelling at a sick, old woman is a good indication), that my oldest daughter is in the bedroom trying to get Mom to sleep. I can already tell that it's not going to happen. And, if I'm wrong and her body becomes just tired enough to relax and be able to rest, it is going to be short-lived. But, the fact that my child had to take over my responsibility is crushing to me. It's my job as her mother to protect her from life's nastiness, not shove it at her in a 100 pound package.

Well, in the time that it took to write this, Mom's screaming has calmed to loud complaining. I don't want to get my hopes up. I have slept for a solid 6 hours two nights in a row. I'm not going to hold my breath hoping for a third.

And, it the time that I wrote that last paragraph, the screaming has begun again. No, I'm not holding my breath. 

Just a normal day...

I sure am glad that we locked the stove and hid all of the matches a long time ago.  Mom has been scrounging around in the trash and coming to me with different items, begging to set them on fire before "he" gets home.  I don't know who "he" is or why he likes burned trash. And, I'm okay with that.

On another note, Mom just announced that she thinks that today should be cancelled.  Finally, an idea of hers that I can stand solidly behind. 

Window of opportunity...

The window of opportunity just slammed shut!

Mom has lost a great deal of weight and is very thin.  We try to feed her almost every time we walk by her.  In addition to her regular meals, we give her a lot of snacks.  Because she can still taste and enjoy sweet items, we offer her lots of pudding, yogurt and fruits.  And, those items are perfect to add high-calorie protein powder.  We mix a couple of tablespoons in and she never notices.  She likes peanut butter and jelly sandwiches, too. We sneak the powder onto the sandwiches, too.

A few days ago, we caught a break. We just couldn't feed her enough.  She was hungry all day, for several days.  And she ate non-stop.  She didn't gain any weight, but she didn't lose any either.  This last Sunday alone, we had fed her 6 times before noon. 

Unfortunately, the blessing was very short-lived.  She's back to being forced to eat almost everything.  Even pudding, which was a sure thing, is returned to us with it barely touched.  With are back to cajoling, promising, threatening, anything we can think of just to get a few more bites into her. 

I recognize this as the normal progression of the disease, but it is very difficult, not to mention frustrating, to watch.   I will end this post with this thought...  When one window closes, somewhere a door opens, so OPEN THE DAMN DOOR!

Disheartened...

I haven't been writing much lately.  I don't know why.  Words just haven't been screaming to be written.  Life has been about the same.  I've had no major meltdowns.  I don't know if that means that I have adjusted to the turmoil or whether I've become numb to it.  Either way, I think that either reason is kind of sad.

On a personal front, I'm frustrated and disappointed.  For the first time in my life I asked for some financial help from the system.  I was denied.  Because I moved in here to take care of Mom, I own a house that I don't live in.  I don't make any money off of it.  But, I was denied assistance because I own too many assets.  In order to get help, I can have no more that $3,150 in assets.  So, in addition to this situation bankrupting me (I've depleted all of my savings and fallen behind on some bills), Even giving up the hope of moving back into my own home wouldn't be enough.  Even if I sold it, the state goes back several years to make sure that I didn't bury any of my assets. 

I have been working for the system for almost 40 years.  But, I'm too well off to receive any help in return.  And that just crushes me.  I just wanted to go to the doctor.  I don't think that is too much to ask. Apparently, the State of California does.

Oh, and they sent me a bill for $743 for sitting at their clinic for 5 hours and speaking to a Nurse Practitioner for about 40 seconds.  Sounds fair to me. 

It's a little before 9.....

 It's a little before 9 am on a Sunday morning, and Mom has been up for at least 4 hours.  In that time she has:

-Taken a 3 foot by 5 foot picture off her bedroom wall and taken it apart. And I mean apart.  The back was taken off, the picture removed and the frame broken at the corners.  It is in pieces.   

-Made the rounds of... Peaking around the door of the bathroom, to see if anyone is using it and needs help wiping or flushing- Looking out the living room window, to make sure the perimeter is secure- Stopping at my bed, to touch and see if I could possibly be asleep still- Checking the kitchen's food supply, to hoard food in case of a hurricane- Inspecting my bookcase in a little alcove off of the living room, to rearrange it- Stopping in the hallway, to adjust the dimmer switch on the light so that there is plenty of light when I strangle her- Going back to the bathroom, to make sure no one got by her and is using it unassisted.  This happened dozens of times before I gave up and sat with her in her room for 2 hours.  What a joy that was.  For her.

-Stolen 4 packs of cookies from the pantry, in case of that hurricane here in the desert.

-Woken everyone up... many times.

-Stripped her bed of all linens and blankets, folded them, and stacked them on the chair.  She left the mattress cover pulled back at one corner to sleep under it.

-Taken one of the sliding  doors off of her closet and rested it diagonally across the open doorway.

-Removed most of her clothes from hangers and stashed them in various nooks and crannies around her room.

When I was a kid, a public service announcement used to come on tv in the evenings.  It asked "It's 10 p.m.  Do you know where your children are?"  This Alzheimer's generation that we are caring for is screaming for a rewrite. " It's 5 a.m., do you know what your parent is doing?"

Will you take me home...

Will you take me home?
I need to go home.
Where are we going?
I don't want to leave.
You have to bring me back here!
Will you take me home?

I'm hungry.
Thank you.
I can't eat all of this.
Do you want half?
I haven't eaten all day.
I'm hungry.

Will you take me home?

I'm thirsty.
Why do I want this water?
I didn't ask for water.
Do want some water?
I'm thirsty.

Will you take me home?

When will my sister be here?
Why hasn't my mother called?
My father is going to be so angry.
Does my mother know I'm here?

Will you take me home?

I hate being alone.
Where is everyone else?
You're the best.
I hate being alone

Will you take me home?

Can I help?
I don't want to do that.
Why do I have to do this?
This isn't my job.
Can I help?

Will you please take me home?

Hostages, pop tops, and canaries...

Just a few observations:

-One of my girls was sick yesterday.  My mom had a very difficult time grasping that there was anyone else even in the room.  In fact, the more time I spent trying to help my daughter, the more agitated Mom became. I knew that I had to remove Mom from the situation, but I also couldn't leave my sick girl alone. Compromise? I made sure my baby had her cell phone and then took Mom to the car. We sat there for 2 hours so that my darling daughter could get some rest without Mom's help.  Picture Mom sitting in back clawing at the windows, screaming for the neighbor's attention.  And, me, sitting upfront smiling, waving and trying to convey with my tight smile, that I am not actually holding my mother hostage in the backseat of my cute little Kia.

-After spending umpteen dollars on locks that promised to keep even the most aggressive dementia patients in the house, but didn't, I finally solved our escaping geriatric problem.  I am installing double-keyed dead bolts on the doors leading outside.  For safety, I am attaching the key to a chain within reach of the door, but out of sight of Mom. Problem solved.


-Mom seems to be on a mission to destroy pet food.  She treats the large bin, where we keep the bulk dry dog food, as a trash can.  She adds water to the cats' dry food, you know those food bowls that have the reservoir that keeps the bowl full?  Yep, water.  Down the top.  And into the dry food.  When she is done destroying the dry food for all animals, she proceeds to the pantry where she pulls the tab on all of the cans of food.  Not enough to actually open them, just enough to allow the food to spoil. Gotta love grabbing can after can of food with the pull tab pointing straight up.

-As we were sitting at the speaker of a drive-thru the other day, Mom leaned over to me, pointed to the car behind us and said,  "Shhhh! Don't look behind you!  I think you're being followed."  I started laughing and continued placing our order.  She then yelled at me, "Do you know nothing?  They want you to talk to them. You need to go!"

-Mom came running out of her room the other night and screamed at me, "Did you find the canaries or not?"
Not, Mom.  Definitely, not.

I want...

I want to be selfish.  I want to be able to be sick and not have deal with this!  I want to make a decision that isn't about her.  I want to be able to lie here and just not feel good.  I want to know that it is okay to focus on me.  I want to be able to get help when I need it, not because there are no other options.    I want to just lie down and cry until I can't cry anymore .I want to find a way to believe that I don't deserve every bit of this Hell!  I want my kids to have their mother back.  I want...

Bad night, good escape and door locks...

It was a bad night last night with Mom.  I always try to let her fall asleep on her own.  She's able to do that a night or two each week.  But, last night sure wasn't one of the good nights.

If Mom isn't resting by 9, I give her a sleeping pill.  Normally, it works fairly quickly and she is solidly asleep by 9:30 and stays that way until about 6 am.  Last night, she fell asleep right away, but we heard sounds coming from her room at about 10.  We ran in there just in time to see her doing a pinball imitation with the walls of the hall.  The pill had definitely made it into her system.  She was so out of it, that she actually let me guide her back to  bed.  Most of the time, there is a no-touch rule.  I call it the "Honestly daughter, I'd rather do it myself" attitude.  But, I did get her into bed and back to sleep. Oh, how I wish that the story ended there. 

Fast forward to 4 am.  She was up looking for "the kids". Are they in school?  Where are they?  I can't find them.  She was up and down for the next 3 hours, mostly up.  Luckily, she was solidly on her feet, so, all I could do was sit quietly and make sure that she didn't do anything dangerous. 

I spent my time browsing Amazon, looking at child locks for the outside doors.  She gave me a fright yesterday when she got through my blocked and locked doors while I was in the bathroom. I found her coming back from the neighbor's house.  I couldn't really relax enough to get any sleep because I couldn't be sure the back door was secure enough to keep her in. 

I will be asking for a different sleeping pill the next time we see the doctor.  My toddler, umm, I mean Mom, is messing with my rest and that does not make for a happy me.



Image credit:  http://www.morguefile.com/archive/#/?q=door%20locks&sort=pop&photo_lib=morgueFile

Just a quick reminder...

Note to self:

Hey, Nancy!  Just a quick reminder...  When you get home from the grocery store and hide things from Mom?  Ummm, yeah, you might want to pick a place other than the oven.  Or, at the very least, remember that there is 3 loaves of bread, 1 package of English muffins and 4 pounds of apples in there BEFORE you preheat the oven.  Oh, and since I'm a little late on that reminder?  Don't forget to clean up the melted plastic that is hanging from the top rack.  Please and thank you.   Nancy

The anti-pill...

It's looking to be another fine evening in this Alzheimer's infected household.  Mom hasn't been to bed in almost 37 hours. 

We tried to get her to sleep last night, but that was an overwhelming failure.  She had her sleeping pill about 9:00 last night, just like always.  She was up and down until 10, which is when she started staggering.  So, I went in and sat with her to make sure that she didn't fall.  And fought with her for almost 5 and a half hours.  Usually I listen to about 5 songs on Pandora and she's out.  Last night, my phone battery pooped out and Mom didn't. 

It almost seemed like she had taken an anti-pill.  That's my way of saying that she did just the opposite of everything that she is supposed to do. She took a sleeping pill, she was wide awake.  She was supposed to lie down, she kept getting up.  She had a drink of water, she wanted more.  She wanted anything that wasn't what she was supposed to have or do. 

When I left her room at 3:30, I laid in the living room on the couch watching for her.  She was up and down until I fell asleep at 4.

Joy of joys, she was up for the day by 6.  She came out dressed in a shirt of my dad's that I hadn't seen since he passed 15 years ago. She wandered around the house for several hours looking for her shoes.  She tried to take mine.  Off of my feet.  She's been agitated all day.  She says that she needs to go!  She sat quietly on the couch for about an hour this afternoon but she was never drowsy.  We had the doors blocked because she wanted out.  The girls and I were sitting in the living room, Mom had walked away and we continued chatting.  Suddenly, someone was banging on the door, yelling, "Your Mom!"  I went running outside and Mom was 3 doors up the street.  The neighbor had seen Mom get out and came running over. So much for blocked doorways and thank God for good neighbors.

It's almost 8 and Mom is still in panic mode.  I don't see her calming down anytime soon.  She keeps trying for the back door.  She rarely stays agitated this long and never without sleep.  I feel like I have a fussy baby who has a full belly and whose diaper is dry.  I would try to take her for a ride to calm her down but she's too heavy to bring in from the car. 

Altered conversations...

A friend recently wondered what a conversation between two confused people would sound like.  It reminded me of a period of time, a few years ago, when a neighbor with Alzheimer's (I will call her Ginger) would come and sit with Mom on the front porch swing.

The strange thing about Ginger's visits, were the visits themselves.  In 35 years of living close to each other, I don't believe they ever even waved to each other.  I never heard a word of dislike towards Ginger, but it was obvious that friendliness towards one another was not going to happen.  We spoke to Ginger's husband frequently, but never Ginger.

So, back to the visits.  While Ginger was more advanced into the disease than Mom was, they both lived in an alternate reality.  Every strange thing that they said, they believed to be true.  It was rather fun, but sad, to listen to them talk.  They both held up their side of the conversation, one would speak, the other respond, etc.  But, they never listened to the other.  Ginger would be talking about the stranger who was always in her house (her husband), and Mom would talk about going for a walk or about her siblings growing up.  Neither noticed the strangeness of the conversation, neither cared.  After awhile, Ginger would stand up and walk home.  And that was that.

I am sure that comfort was found just in the contact with each other.  I am glad that they found that comfort.  And, I hope that going to Day Care provides that contact for Mom.  Everyone needs someone who will listen, even if it is an altered way of listening.

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. 

Auto-focus...

You know those newfangled cameras that focus your picture automatically? It seems to magically calm the shakiest hand and take a clear, crisp picture... 

The only thing positive that came out of my visit to the Memory Clinic with Mom on Friday, was that the one doctor who actually saw us as people, gave us a prescription to help calm Mom's agitation, paranoia and delusions.  That piece of paper, tucked safely in Mom's packet of paperwork, became my focus.  We went to the Memory Clinic hoping to get this very prescription.  And, as long as I had it in my possession, the day was not a waste.

As of right now, our day from Hell was a total waste.  I went to pick up the prescription today.  The pharmacy was unable to fill it because the kind doctor forgot to include her license number and the insurance company denied permission to fill the order.  I  now have to trust that the pharmacy will spend the time to track the doctor's license number down.   

And here's where I need the auto-focus from that camera. My hand is shaky right now and I could use some help seeing the picture more clearly. 

p.s.  I've never done a p.s. on a blog entry.  I've had additional thoughts after I've published an entry, but I don't usually feel the need to add something.  Normally, I write, edit a few times and then hit the publish button..  This time I wrote, edited a lot and then let it sit. I edited and let it sit quite a few times and it still wasn't what I needed to say.  Most of you know that  I don't write this blog for any reason other that stress release and to help me put my thoughts in order.  So, why wasn't this one easier? Why couldn't I click that publish button? After walking away from this entry many times, coming back and rereading my words it hit me like a ton of bricks!  My auto-focus does not come from a camera. There is no magic button.  It comes from my faith.  And, when I put my faith in Christ, everything becomes clear.  He is my auto-focus. He steadies my hand.  He is the clarity that I need. 

It is not okay...

After what was possibly in the top 5 worst days of my life, here are few thoughts about my day spent at a Los Angeles County hospital.

-It is not okay to make a patient wait 6 months for an appointment that you required, only to ask the patient, "Why are you here?" We were there because you demanded it.  You tell me why we were there.

-It is not okay to tell the patient, who has waited 6 months for this appointment, that you cannot help them because you don't have any lab or test results. You scheduled the appointment, it was your job to ensure that you had what you needed. 

-It is not okay to tell the same patient that all of the completed tests and lab work was a waste of time because you don't share info with other parts of the County, even though it is the same Health Care system.  That is not my problem.  If you wanted tests done before we arrived, you should have ordered them from a place that shares the results with you. 

-And because you had no test results, it is not okay to patronize the caretaker and tell her, "I guess I'll have to take your word for it that she even has Alzheimer's."  You're going out on a limb there Doctor, because I actually think that she just has a head cold.

-It is not okay for the doctor to hand a donut to the patient and look at the caretaker and say, "I'm not offering you a donut because you need to lose weight."  Although, without his obviously divine insight, I might never know that I am fat. 

-It is not okay for the doctor to become frustrated with the agitation of an Alzheimer's patient, and then turn to the caretaker and nastily ask why the caretaker didn't bring anything to distract the patient. It is not okay to then sarcastically suggest that "maybe a lollipop will calm her".

-It is not okay to make an obviously agitated Alzheimer's patient sit through 5 different doctors asking the same questions over and over. 

-It is not okay to escort the patient to the ER for expedited tests and labs and then make the patient sit in a room for 9 hours for the results.  I am still trying to figure out what was expedited.  I have never gone to a regular lab and been made to wait 9 hours.

-It is not okay to hook up an IV line to the patient when there is no indication that she will need it, only to remove the unused line 8 hours later.  This caused the patient pain and forced the caretaker to physically restrain the patient to keep her from yanking out the IV.

-It is not okay to tell the caretaker that all of the tests are done and then become irritated when the caretaker allows the patient to go to the bathroom.  Done means done. And, because of that oversight, the method used to get urine for the test was unnecessarily cruel.

I understand that hospitals are short-handed.  And to be fair, I met some amazingly kind nurses today.  But, only one out of the five doctors today saw people.  The rest saw a patient and her caretaker.  I walked into the appointment today with a feeling of hope and excitement that we were finally going to get some new help.  I left feeling exhausted, humiliated, sore from a never ending battle and defeated.  And it is not okay.

It's 8 am...

My morning so far: 

I woke up at 5:30, because some idiot texted me a naked picture, I'm assuming, of himself. I can't imagine why he would send out a picture of someone else.. Or do they care?  Anyway, I was so ticked that I couldn't go back to sleep.  I laid there and mentally wrote the nasty answer I wish I could send.  But, you just can't respond to idiots like that because that's what they want.  Or do they?  See?  That's why I couldn't go back to sleep. 

Mom got up and instead of pajamas, she was wearing yesterday's shirt and a sweater as a caprirt.  One leg was in one arm (capris) and the other leg was in the body of the sweater (skirt). Caprirt.  Remember, you heard it here first. (I know some of you are wondering, and, yes, I took a picture. And, no, the camels did not return her pants.)

I fought with Mom about washing up.  She didn't want to use soap. When I put it in her hand we fought for several minutes about whether it belonged in her mouth.  She tried to brush her teeth with the soapy nail brush. And on it went. You know those signs in public restrooms that tell you to sing the ABC song twice while washing your hands?  Or is it the Happy Birthday song? Anyway, we could have done the long version of Stairway to Heaven.

As she ate her breakfast, she kept rubbing her arms like she was cold.  I gave her a sweatshirt and asked her to put it on.  She said, "Oh, God Bless you! It's so warm!"  She then folded it neatly and set it on the counter. 

While she finished eating, I ran for a quick shower.  As I stepped out, I thought, "Hmmmm, the bath mat is gone.  I wonder who could have taken that during the night." 

Oh, look.  It's already 8 am. 

And another one gone...

I'm just feeling so defeated tonight.  Just so very defeated.  Each time another simple activity is scratched from our list of things that we can do, I start humming, "and another one gone and another one gone, another one bites the dust".

I found out 3 days ago (Friday night) that there would be a mandatory school orientation tonight (Monday).  I had no option but to take Mom to the meeting with us.  Mom was being very disruptive and argumentative.  She refused to sit down.  She was unable to lower her voice.  She accused the photographer of stealing her purse. She tried to pick up every coin that she saw on the carpet.  Unfortunately, the spots were dirty, ground-in pieces of gum.  When she was unable to pick them up, she very angrily yelled, "Now look what you did!  Now I have nothing!  That was MY only nickel and you took it!"  All of this was before the Pledge of Allegiance was even said.  Katie tried to take her outside and let her walk around.  That idea was met with failure, as well.  We left immediately after the principal introduced the first speaker.

The looks of pity and sympathy were almost worse than people changing seats to get away from us.  I walked from the auditorium with this stranger who, before this cruel disease took her away, would have done anything to avoid being the center of attention.  Some of the other parents gave me looks of such heartfelt sympathy that it broke my heart.  I was prepared to leave the room when my young children were disruptive. I am surprised at how much harder it was to do with my parent. 

A little good news...

I woke up today with a positive attitude and a light heart.  It's amazing how a little good news can ruin a good day. 

One of the things that is very difficult to talk about, for anyone, is money.  In the best of times, you just don't talk about how much money you make.  And, in the hard times, you don't discuss the juggling that you have to do to get your bills paid.  You definitely don't talk about the bill collectors who are calling or the pink bills that you receive.  It's no wonder that caretakers rarely talk about the financial devastation of this disease, both for the victim of Alzheimer's, and the caretaker.

I have been blessed for most of my adult life and have always made enough for the needs of my family.  I paid my bills.  I had a great credit rating.  I paid my taxes and I helped those in need.  But, all of that changed when I became a full-time caretaker.  This is uncomfortable for me to discuss.  So, I will just say that things are tight right now. 

So, what's the good news that ruined my day?  My brother just came to the door and shared that he got a raise.  A rather large raise.  He went on to share his ideas of vacations and cars he has been looking to buy.  Keep in mind that he wasn't "struggling" before the raise. 

I chose to move here 9 years ago to financially help my mom.  That was all that I had planned to do.  Now, I am legally obligated to stay here regardless of what it has done to my family's finances.  I cannot walk away.  I cannot get a job.  I must stay here and watch other family members thrive. I have so many emotions that I am feeling right now.   I am jealous.  I am furious.  But, mostly I am hurt.  I am hurt that nowhere in his plans was a single thought for his mother, his nieces or me.  How many times do I have to be hit in the head before I remember that this is my problem?  I just wish that when I was growing up in a family with 5 kids that someone would have explained how to be an only child.

 

Rambling...

Mom is in her rambling mode right now.  She just walked up to me and said, "We have to do the connect stuff.  Well, except for the connecting part.  Otherwise, the good stuff is there.  It just don't connect."  Weird that her rambling describes her condition somewhat accurately. 

Too late...

As this disease progresses, Mom becomes the center of attention more and more often when we go out.  Partly because she looks different now.  She's very thin and cannot move quickly.  And I find this sad.  Just a few years ago she would have said, "I don't think that physically I act my age. I don't act old."   But, mostly, people notice her because she speaks to random people about irrational things. 

When she notices a group of people, or even an individual, she will frantically gesture to get their attention and then yell to them.  "NO!  Don't go that way! Come back here! NO!"  Or, "There they are!  Come here!"  The last time she did this, I quietly suggested that she shouldn't yell at people.  She then yelled at me, "Why not? They're getting away!"  When I told her that we didn't even know them, several people in the area laughed.  Yes, people notice Mom.

If it is a particularly embarrassing situation, I will smile and apologize for Mom's comments, sometimes explaining the reasons for her behavior.  Some people give a pitying look.  Some glare at me for being firm, or what they probably consider harsh.  Some smile with understanding and mention someone they know who has the disease.  

But, more frequently, when people find out that this is my mother, I receive the comment, "Well, at least you still have your mother."  I express my genuine condolences for their loss.  But, I have the need for them to recognize that I am grieving too!  I lost my mother several years ago.  Everyday, I am watching a disease decimate the person who used to be my mother.  And when my mother is finally at peace and whole again, condolences will be too late.