No more hoops...

Mom is still in the hospital. And we are still searching for a home to place her long term.  The decision to place her was much easier than the reality.  From her having an insurance that is not accepted by most facilities, to government agencies failing to do their jobs (which prevents me from changing her insurance), finding a bed for her anywhere within a 2 hour driving distance has been a difficult task.

Yesterday, was a series of highs and lows, mostly lows.  They found a place for her in a facility that I do not like.  But, the alternative is bringing her home to an ill-equipped, untrained, and desperate person to care for her.  For many reasons, in home help is not an option.

Just as I had resolved myself to the non-choice, the insurance case worker called and said that the space for her was no longer available.  Add to that the fact that Mom's case worker for Medi-Cal still has not updated the system to reflect that I am Mom's legal representative (after signing the document 3 years ago and a request 3 months ago to correct the oversight) which leaves Mom without a voice. I cannot make any changes to her insurance to make this move easier. 

I spoke to a woman yesterday who has been caring for her Alzheimer's mother for 13 years.  She needed Social Security to help her resolve something at her mother's bank, only to be told that they could only speak to her mother.   They did not recognize the legal documents that she has that has made her the voice of her mother for the past 13 years.  The woman had to get a lawyer involved to resolve the issue. 

How many families are forced to go through this?  How many loved ones are being held hostage by a system that is broken and has no compassion for the very people it is supposed to protect?   Being a caregiver is difficult enough without having to jump through never ending hoops to do it.

It was just misplaced...

Mom has pneumonia.  Again. This is the third time and the second time that she has been hospitalized. And I just have to say it, having her hospitalized is more tiring than having her home.

Every doctor that comes in contact with her asks me the exact same questions over and over.  I want to place a sign on my forehead that says, "Read her chart!" I could understand the curiosity if it was something that wasn't there.  But, calling me a 4:00 am to find out what medications she's on (that are listed in her chart) seems a little ridiculous to me.  Just a little.

And each doctor has a different answer for my questions. One in particular is "Does she have Congestive Heart Failure?"  I have received these answers, "Yes. It was diagnosed during her stay in November.", "No.",
"I don't know.", "I haven't researched it."  "With the instructions to not extend her life with any extra measures, it isn't important at this stage.", and, "Yes, she does." Well, as long as we can all agree. 

But, one of the good things that I've found in all of this is my compassion.  It would be very difficult to see anyone lying in a twisted fetal position and sobbing and not feel at least a twinge.  When it's my mother, it breaks my heart. I tried to talk to her while holding her hand as much as possible, but she kept clawing at me and twisting my fingers until I had to pry my hands away and tell her that she was hurting me.  I cannot even imagine what is going on in her mind.  It must be horrendous.  I know it is devastating to watch. 

The next step is to find a place for her that will help her find comfort and some peace.  I am content with the decision to allow others to care for her because I cannot. 

I must choose to change mine...

My previous post was about judgement from the outside.  This post I'm going to talk about the judgement that comes from within me.

Somewhere along this journey, I lost some valuable things (and I don't mean my credit score).  I have lost my compassion and my patience.   

So, where did they go?  How can I look at what my mother has become and not feel compassion?  That's an easy question for me to answer.  It's because I don't have any patience left.  Those two virtues normally go hand in hand.  The compassion for another living being demands that you respond with patience.  The patience allows you the time to find compassion.  Neither is worth a darn if you don't have the other.

How many times must I clean disgusting things from walls and finger nails and clothes and linens, only to have to clean them again before I have her completely dressed again?  Today it was four times within a 30 minute period.  20 minutes into which I had already left my daughter standing across town waiting for me.  30 minutes of disgust and a person who can't follow any instructions, much less something as simple as "Don't touch that" or "Stand up".  Yes, my mind knows that she is sick.  But, my patience is trying to contain a mess that is beyond my tolerance level.  The patience is gone and the compassion is dead.

I recently watched someone deal with Mom with nothing but kindness.  Mom responded, for the most part, with what I would consider calmness, at least in comparison to her normal behavior.  I watched these 2 interact for almost 45 minutes.  I walked away from that interchange feeling like the stuff I am forced to clean up too often these days.  How much of the behavior I receive from Mom is a direct result of the impatience that I give her? 

I see videos of Alzheimer's victims and they aren't like Mom.  I know that if you've seen one Alzheimer's patient, then you've seen one Alzheimer's patient.  They are all different.  But, Mom is so very angry and bitter.  Mom is never happy.  She screams at me that I haven't fed her for 3 days as she is chewing her food and after I've spent a half an hour coaxing her to eat the food.  I spend the majority of my time ignoring her or drowning her out.  How shallow am I that I want my Mom to be nice to me?  To recognize that I've done all that I can? 

I know she cannot do either of those things. As I said at the top of my page, "She cannot change her behavior, therefore, I must choose to change mine."  The part of me that can still be fair, knows that I can do better.  It knows that I can be kind.  And, I believe that this won't be over until I've found the patience to allow compassion back into my heart.

I am just getting started...

So many thoughts are running through my mind right now.  I have tried to make some sense of it all.  When that failed, I came here. Writing it down always helps calm my mind so that I can process it all. 

A few entries ago, I described the financial portion of this journey as "the unspoken, embarrassing, and most difficult part of being a caregiver".  Someone whom I have never met, commented that it sounded like I was begging for handouts and sympathy.  And, that response is why the subject is so often unspoken and embarrassing.  We don't talk about it because it makes those around us uncomfortable.  And, that just reinforces the reasons that caregivers feel alone.  But, I'm saying it again and anyone reading this is welcome to take it however they want to take it.  

I am broke.  Despite working and providing for myself and my family for almost 40 years, without asking for handouts or sympathy, I am broke.  If reality makes you uncomfortable, then another blog, maybe about gardening or scrap-booking, might be more your cup of tea.

I am already feeling better having gotten that off of my chest.  I can now see that tonight might be a 2 blog kind of night.  I have other things to say, but on a completely different subject. 

My apologies to Frozen...

We had almost forgotten what nights from Hell are like.  Thankfully, Mom is here to remind us lest we ever forget.

One of the highlights of our recent night from Hell, was Mom standing in the middle of the room and loudly singing, "Is there anyone awake?"  I honestly thought I had made that up in my exhaustion. Turns out that it happened.   Well, that had me thinking how wonderful it would be if it was an actual song. 

Here's how I think it would go (to the tune of Do You Wanna a Build a Snowman?)--

Is there anyone awake?
Come on, I'm hungry NOW.
You never feed me anymore,
Or take me to the store,
Three days, I could eat a cow.
I used to be your mother.
But, now I'm not,
I wish that I knew just why.
Is there anyone awake?
Yes, you have to be awake.

Is there anyone still reading? 
You don't have to still be reading.

Okay, bye.