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.