JUDY FROM THE BLOCK

JUDY FROM THE BLOCK

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Phoenix, Arizona, United States
Retro wifey, mommy to a princess, editor, PETA fanatic, and I Love Lucy!

Saturday, September 25, 2010

DAYS WITH MY MOTHER....

The beginning of fall!  I always loved this time of year, something about the change in the weather, the smell outside in the air, fireplaces burning, plus I do a whole lot more cooking and baking in the fall and winter than any other time of the year; that makes for a happy Mr. Camel.

So, you'll notice I stated above that I "lovED," not "love" this time of year.  I guess I really have a love/hate with the fall any more.  It's ironic how one day, one hour, one minute can change your whole life.  I know that is what happened to me on October 31, 2007.  I remember the day well, as it was of course Halloween Day. 

SIDENOTE:  To backtrack a bit, mom was home from work because she had taken a horrible horrible fall getting out of the bathtub just the week before and still, she was not quite up to par.  Now understand this, for mom to miss work, IT'S DAMN SERIOUS!  For example, my mom had breast cancer and had her entire right boobie removed with an open chest wall the size of the Grand Canyon as you can imagine, and she went back to work 2 weeks later.  You couldn't keep her down, and especially you couldn't keep her away from work. 


The PCP was concerned about mom's fall from the bathtub and the excruciating pain she was still in; although the PCP didn't arrange for scans right away, she did do a referral to a neurologist and our appointment was, October 31, 2007.   Halloween Day.  Mom liked Halloween, she always sat outside passing out candy to the kids in the neighborhood with her pumpkin full of bags of candy.  Mom liked to make little individual bags of candy for each kid to receive.  And for the kids that lived in our neighborhood on our block, or as we called them "her secret favorite kids," she made them a little "extra sumthin sumthin" in their bags every year.  Oh yeah, and she ALWAYS dressed up like a clown for Halloween every year at work.  I couldn't find any pictures, but I know we have some somewhere.

So, off to the neurologist we go.  Mom was so hunched over that day.  I had noticed her posture wasn't so good lately, but I just brushed it off.  I think we don't want to see the aging process in our parents take place.  We aren't oblivious to it, we just don't want to think about it.  When we arrived to the neurologist's office, between the mounds of paperwork I had to fill out for her, write a check for copay, etc., mom and I laughed at all the costumes the staff members in the office were dressed up in, both the guys and gal nurses too.  Plus, a few of the patients were their in costume as well.  Mom liked that!  It was Halloween, a new crispness in the air.

We finally get called to the back room, where actually the doctor was already sitting in.  I was impressed!  He started going over her history, the fall in the bathtub, just watching and observing her, asked very few questions.  Within 10 minutes of being in his office and before he even began a full examination, of both physical and cognitive testing, he turned to me and said, "your mother no doubt has Parkinson's disease, it's clear to me."  I looked puzzled and frightened.  He did go on do the full cognitive and physical examination to determine the stage of her disease.  I kept hearing the word "Parkinson's" in my head.  Nobody, I mean nobody in our family, either side, have ever had Parkinson's disease.  Do I really know what Parkinson's disease is?  I've worked in the medical field for 15+ years, I've typed hundreds of patients with Parkinson's disease, but what did I really know about this disease!  Snaping back into the moment and watching the doctor perform tests on her arms, her legs, her back, her knees, her feet, her fingers - head to toe; then moving on to a series of questions regarding memory recall, prior presidents, spelling "world" backwards, count by 3s, and most importantly today's date (which she got wrong...REMEMBER, IT'S VIVIDLY HALLOWEEN DAY)!  She failed pretty much everything he asked.  The doctor sat both me and mom down and said, "she is moderate-to-severe stage already."  "How could she still be driving?"  "How could she be functional at work?"  "How has she managed to go on with the foot tremors, the head tremor, her stooped posture without someone noticing?"  It was such a "WOW" moment.  Hindsight had never been so clear to me!  I guess I had noticed it, but this is MOM, she's superwoman, she can do anything, she's invincible!!!  And that day, I learned that she wasn't, she was after all human and now we are in the fight of her life.  The doctor had clear instructions for mom, which didn't bode well with her.  He told her, "you will never drive again as of today."  "You will never go back to work as of today."  "We are beginning on new meds for tremors, memory, and pain."  "Arrangements for MRIs, CAT scans and x-rays are underway." 

SIDENOTE:  Medications for Parkinson's disease and Alzheimer's disease (which is very very similar to Parkinson's dementia) are the MOST EXPENSIVE MEDICATIONS!!  Mom was on this patch called Exelon that seriously was $340 for a 1-month supply!  That was just one of many medicines she required.  Insurance didn't pay crapola!!!  I have had some serious fights with Medicare and Medicaid let me tell you, but in the end I learned that the elderly are so left behind in benefits that they so deserve.  It's ashame really.  Not all folks are in a position to pay that type of money for these medications that they NEED; we were lucky that dad provided well for mom and mom was well-prepared for her elder years.


As the days grew into months and watching mom deteriorate, it was truly the hardest thing I have ever experienced in my life.  I knew when she was no longer interested in getting her nails and hair done, we were in BIG trouble.  Mom was a vain woman and things like that were extremely important to her.  She never missed a hair or nail appointment.  I even tried to get her to let me hire them to come to her, she wouldn't do it.  The dementia and the hallucinations, however, were the worst; although, sometimes it could be so funny and so childlike that you laugh and laugh.  At other times, it's sad and downright tearful.  There are so many stories, but I will give you just a few to show you their mindset: 

The dementia:  Mom was ALWAYS cold...brrrrrr cold!  No matter how many blankets I would keep on her, she would still be cold.  The top blanket that I had on her was a X-mas quilt with snowmen with snowflakes coming down.  She was laying there in bed and I was sitting next to her talking to her, she was acting very childlike, she started picking at the snowflakes one by one on the quilt like she was trying to pick them up.  I said, "mom what are doing?"  "I am picking up the ice," she said.  I said that's not ice, those are snowflakes.  She said, "ohhhhh, I thought we were standing in the freezer?"  Things like that make you laugh so hard, you can't help yourself.  However, she is serious, dead ass serious, and she didn't like it when you laughed at her.  That would then set off another trigger of events and another mood, or should I say a "tude." 

The sad side would be when she would have the most serious look on her face and say to me, "Judy dial your Aunt Lois's number for me."  "I can't, mom."  "Why?"  "Mom, Aunt Lois died."  "SHUT UP Judy Lynn, oh wait til your dad gets home from work and he finds out just how mean you are to me.  You don't take good care of me like you promised you would, you liar." Pulling on the heart strings and I have to sit there and just take it.  Then, I would have to tell her that dad had died too.  She would cry and she would again go on to tell me how mean I am to her.  (These were the times I had to be the strongest in front of her, however late at night after she went to bed I would go outside in the backyard and swing and cry, cry, cry, and pray for strength).

This horrible disease takes away their short-term memory.  Though long-term memory is the last to go and mom could tell you all about 1945, 1957 and 1975.  And everyone - as in her kids, cousins, our friends - in her mind we are ALL STILL KIDS!

The hallucinations:  At 5 in the morning, something woke me from a dead sleep.  I got up and went to check in on mom.  She wasn't there.  The front door was wide open.  She was standing outside in the front yard in her PJs with a bag of Dorito's and a bag of M&Ms calling out for my nephew (her grandson, Stevie).  Now mind you Stevie is approximately 30 years old at this time, however in mom's mind he is still a baby.  I asked her what she was doing outside and that we have to go inside.  She said okay (very frantic-like), I'll go back inside, but I'll be sitting right there on the couch when Steve (Stevie's father) gets back with Stevie because I think he's trying to kidnap him Judy!!  I've called your dad at work and he is on his way home.  I'm waiting for him to get here.  Wowwwwwwwwww!!!  How was I gonna deal with this one here!  She comes inside and goes and gets a plastic Fry's bag out of the kitchen, goes into the den and gets a remote control from the TV, then grabs one of the cordless home phones and packs these in her Fry's bag and sits on the couch.  Ties it up all nice and neat like too :))  I just remembered what the doctors had been telling me about "sometimes you play along and sometimes you got to be honest about the situation."  This is all new territory for me and so it's a learn as you go process.  I told mom that dad couldn't come home right now from work but that he would talk to her about it later, lets go watch TV and just calm down.  Basically, it passes in their mind fairly quickly.



Mom and her damn Fry's bags!!!
btw....mom's way of "flipping the bird" was by her using her pinky finger,
since she somehow thought that didn't seem as naughty,
but we knew what that meant if you get the "pinky."  LOL!

There are so so so many stories like these, but you get the jest of what it must be like day to day with a parent who is battling dementia.  I will tell you this, I wouldn't trade one minute of the time I got to spend with her when she was ill, even when I was so scared to death that I felt like running.  Never knowing if you are making the right decisions.  After hospice got involved in mom's case, I can't say it eased my tension but it certainly feels like these angels swoop down from heaven and lifted your shoulders up and gave you the strength to carry on.  They also educate you in a way for "preparation" (though I hate that word "prepare" as one is NEVER prepared for the death of your parent).  Their knowledge guides you and when they show up at your door pretty much every day, you are so happy to see them and so happy to be able to talk to someone who understands what I am going through.  Even mom's bather from hospice, Judy, would call me routinely just to see how was I doing.  They offer every resource available to you!  These folks who work for hospice facilities are truly a gift from God to any family facing the difficulty of being a caregiver for your loved one.  Mom's nurse, Cheryl, was the best!  I just love her, her kindness, her spirit, her treatment of mom (like it was her own mom).  These two impacted my life so deeply that they started to become family, and YES you will find both of them on my FaceBook page....LOL!  And of course, Pastor Carl!  You talk about a wonderful man, he was sent here by the Lord as a gift for mom.  He would always bring with him his karoke machine and would sing Elvis Preseley to mom....he was extraordinarly good I might add.  He could do Johnny Cash too, which of course would bring back memories of dad for mom.

Mom died November 8, 2008, pretty much 1 year later of being diagnosed with Parkinson's disease.  I have learned that some fight hard to beat this ugly disease, though others give up and succumb.  Mom, I believe, gave up.  She was always such a feisty fighter in her day and I just couldn't understand why she didn't fight harder.  She heard the word Parkinson's disease and she allowed it to beat her.  One doesn't die of Parkinson's disease per'se, they instead die from the side effects of Parkinson's disease.  I didn't take pictures of mom when she was dying, mainly because I promised or should I say swore to her I wouldn't.  I don't regret not having pictures because it's forever etched in my mind and it's not something one likes to remember.  The guilt you feel because you wonder if you yourself did enough.  Every time I would have to administer her morphine, and she was so anti-drugs, I wondered if I was killing her.  I remember watching her take her last breath...she breathed in and she just didn't breathe again.  It was just silence.  The moment they try so hard to "prepare" you for is here and it hurts harder than you know, which again is why I say you can NEVER PREPARE.  I remember Bug saying to me that he would call Cheryl when she passed, which is what we were told to do first before calling anyone else.  I said NO!  I promised mom I would do it and I will!  Mom wanted to die here at home and I made promises that I kept to her.  The conversations we had before she became incapacitated are forever my secrets.  When they come to take her body, I climbed into her bed and just layed there and cried and cried.  I try hard as hell to push those "last days with mom" out of mind and try to remember her laughter.  She loved her family, her side and my dad's side.  I try to remember how she looked when I was growing up and the full life she led. 








Dad, Aunt Pat, and Uncle Alfred (one of their brothers)

I chose to speak about my mom's last days at this time in the hopes that this will help others who are going through such a horrible experience as this.  It just so happens that I recently discovered that my Aunt Pat (my dad's one and only sister) is now suffering from Alzheimer's disease.  Again, Alzheimers and Parkinson's are so incredibly similiar and I was hoping that this blog will in some way help her family (her children and grandchildren) get through a real life nightmare of sorts.  If you need help, don't be afraid to ask.  If you need education, learn.  If you feel guilt, talk about it.  If you feel confused and frustrated, find the answers and turn to God for the strength.  These are our parents who did everything for us and would have sacrificed their own life for ours.  Now they need us and believe me, your reward is the peace of mind you will have in the end that you did everything you could to show them how much they meant to you, you're ready to take on the responsibility of just loving them and making them proud. 

One thing I know about my Aunt Pat is how important her kids and grandchilden are to her.  They will honor her by loving her and holding her hand down this dark road that we know nothing about.  I will hold her and my cousins in my heart as she battles this horrific disease and pray for them all.  


Aunt Pat most recently

Aunt Pat and Uncle Dale...the way I remember them!
Please take the time to watch this video of this wonderful man, Phil, who walked that mile in my shoes.  I relate to his pain as he relates to mine.  I think his words speak our emotions and feelings of what it's like to watch over someone we love so much deteriorate right before our very eyes, but how much we owe them for who we are and fulfilling our hearts, even in the end.  





 

3 comments:

  1. nice very nice tribute. thank you for sharing this wonderful story. By the way you do look allot like your mother. That is a compliment. Kari

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  2. I loved your story Judy. It was sad , but also beautiful.

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  3. Aunt Jean was a very strong woman..i loved this Judy thank you for sharing it with me.

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