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. 

Thanks, Mom...

Just a quick funny from Mom:

As we sat waiting at the pharmacy today, Mom jumped up and approached a man sitting across from us.  Very loudly she said, "I just wanted to warn you.  My dad (she points to me) is going to hit on you. I thought I'd give you the chance to run."

Yummy...

This is hanging in Mom's window today.  There's a stuffed bulldog, an empty paper towel roll, and enough dried up bread for a nice sized meat loaf.  Can you say yummy?               

Cruise control and flat tires...

This disease is so fickle.  Mom can go from not knowing her own name to calling me by name in the blink of an eye.  We have been going through each day on a virtual cruise control.  We sort of steer the day on the familiar route. Then we cruise along at the same safe speed that has been navigating the turns and speed-bumps with relatively little discomfort to the occupants of the car.  And then we get a flat tire and we have to pull over and regroup.

Well, today was definitely a day of flat tires and regrouping.  After several months of relative passiveness, Mom chose today to revert to her attempts of escaping from a moving car.  I had started to think the seat belt locks had become unnecessary.  My dad would have said, "That's what you get for thinking."  Mom and I were heading home from Walmart.  It was hot, she was agitated, I was frustrated, I forgot to put the lock on her belt.  Between her complaints of having to get home, having to go into a store and pay them, being late to work, etc., I heard the tell tale click of the seat belt being released.  I told her that she needed to put her belt back on.  She then attempted to open her door.  Thank goodness for "Grandma locks" on the back doors.  I again told her to put her belt on.  She slid over to the other door and tried to open it.  And, being my mother's child. I yelled, "You put your seat belt on right now young lady!  Do not make me pull this car over!"  Guess what?  It worked.  I learned from the best.  

We made it home safely.  But, I knew it wasn't over when she got out of the car.  She headed for the street and said, "I'll see you later."  I tricked her into the house and began the Grandma proofing that I haven't used in months.  The kitchen door closed and blocked.  The living room sofa blocking the front door with my big butt in the middle of it.  We've been home about 90 minutes.  She's had lunch and a snack with her requisite negative observations, "What is this white crap?  I haven't eaten in 2 days. I'm hungry."  I've settled in for a long afternoon with my Pandora, ear phones and laptop.  She is unhappy with the arrangement.  But, she's safe and I'm saving my remaining sanity.  You take the wins where you can.

I'm guessing this retro-phase won't last for long.  Tomorrow we will probably be back on cruise control.  She will likely complain and talk about leaving with no real attempts to do so.  But, I have to wonder if AAA includes virtual flat tire assistance in my membership.