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.