Put your hands up...

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

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

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

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

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

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

New behaviors...

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

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

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

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

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

My broken heart...

How to break my heart in one easy lesson.

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

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

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

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

Maybe she has them under lock and key somewhere. 

She has it all locked it up...

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

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

To post or not to post...

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

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

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

 

I know I shouldn't laugh...

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

Words...

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

No answers...

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

Just me...

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

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

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

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

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

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

A new friend...

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

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

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

In our discussion she said this about Alzheimer's:

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

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

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

We are having a heat wave...

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

Translation:  It's hot in here. 

Been here and done this...

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

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

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

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

A good question...

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

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

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

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

Grrr or ouch...

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

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

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

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

45 minutes in bedlam...

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

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

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

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

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

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

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

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

Run, Nancy, Run...

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

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

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

Keeping my mouth shut...

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

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

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

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