Piece by piece

For some time now I have been unable to write and get my feelings out.  This latest chapter in involving my mom and Alzheimer’s Disease has been a heavy one. This blog is my therapy.  Once I am able to get the words out, it seems to lift a burden off of my heart.  I can’t even count the number of posts I have written over the years and just not published.  I have sat in front of the computer numerous times in the last month and nothing.  A few nights ago I was praying and almost asleep and The Lord told me to write….

A little over a month ago I got a call that I have been dreading.  Usually the baby will wake me up for her morning feeding, but on this day it was the phone.  Never a good sign.  Mom had been rushed to the hospital via an ambulance.  She had a seizure.  My heart stopped when the nurse from her facility explained what happened. What do I do now?  My husband had to leave for work and I had two small children.  There is no way I was going to wake up the 2 year old and take both girls to the ER.  I had no clue what I would be walking into.  Luckily, my mother in law came to the rescue to help with the girls so I could head up to the hospital.  Side note: I have seriously been Blessed with the world’s greatest mother in law! I can always count on her to help with the girls, great advice or just to listen to me yap.  <3

Up until that point my mom had been healthy.  (As healthy as one can be with late stages of Alzheimer’s).  Seeing her lying in the ER bed was heartbreaking.  She looked so frail and weak and was extremely tired from the seizure.  I was told that it was almost two minutes long.  That day and the day to follow were some of the worst that I have encountered with my mom and this dreadful disease.  Being in the hospital is absolutely horrible for most people, but admit someone with dementia and it’s a whole new ballgame.  It’s catastrophic. I had to make sure nurses knew so they would treat her differently than most other patients they would have that shift.  I helped constantly hold her down or re-direct her so she wouldn’t pull out IV’s and stayed by her side to give her reassurance that she would be ok. She was terrified. As of this point I was still the only person she knew or recognized.  The first few hours after her admittance I was constantly in tears.  Seeing my strong, capable mom so terrified and afraid broke me.  It brought me back to the day we moved her into the first facility almost three years ago.  Once we moved all of her things into the assisted living facility and were about to leave she looked at me and said, “Please don’t leave me here Tarah.  I want to go home.”  I hugged her and reassured her that she would be ok, and I wouldn’t let anything happen to her.  And as soon as the door shut I cried.  Hard.  And being 8 months pregnant it did not help.  Here I was once again, my hands tied and praying mom would be ok.

Fast forward to a month ago.  Ever since the hospital my mom has slowly started to regress.  Her speech was getting more slurred, her walking was labored and she was having smaller seizures though out the day. Even on seizure medication.  One day she even lost her smile.  That day I couldn’t hide my tears from her.  Every time I looked into those beautiful brown eyes that I have seen since the day I was born, my heart broke further and further.  What would the world be like without my mom’s amazing smile?  The smile that God so graciously gave me also?  She is slowly being taken away from me, piece by piece.

A week later I attended the Alzheimer’s Associations breakfast to celebrate the Champions and Grand Champions from last year.  I felt so proud to be apart of this group and to know that I had a part of helping to raise money to fight this destructive disease.  Even though I went alone and was very much out of my comfort zone, it was so uplifting.  I met others directly affected with Alzheimer’s and even met someone my own age who’s mother also has Early Onset.  Thank the Lord that I am not alone in this battle being as young as I am.

After the breakfast I had a meeting at my mom’s facility for her quarterly assessment.  I went into the meeting pissed at this disease and determined to make a massive difference this year with my fundraising goals.  I was on a mission and doubling what I raised last year!
And then, time stopped and I was derailed off my high.  After the usual assesment meeting where we go through her day to day requirements and how many points (levels of care have a point scale), the medical director dropped a bomb shell. She suggested that I start contacting hospice companies.  Hospice.  The word itself sends me into a panic.  Hospice is for people who are dying.  Mom is still here.  In reality though, the most heart wrenching part of this disease is that even though my mom is physically still here, she is a complete new person.  Her beautiful eyes, the hands that are so much like my own are here, but she is not here at all.  She is slowly dying on the inside and everything that I have known and loved about her is almost gone.  She rarely remembers me anymore.  She is a shell of my mom.
Long story short, we signed my mom up for hospice that weekend.  The realization of the end has finally settled and I am somehow moving more towards some acceptance even though I don’t know if I will ever really be there until she is actually gone.  I spend so much time talking to doctors, the facility, medical billing, etc that when that is all over… I don’t know if I will know what to do with that time. Being her caretaker these past four years have been so challenging, yet so rewarding because I know I am honoring my mother.

Mom had an upturn these past few weeks after we took her off a medicine and I am hopeful because she seems to be getting back to her “normal” self that she was before the hospital.  Even though some things may be getting better, her manic behaviors are increasing.  Since she is stronger and more agile than most patients living at a Alzheimer’s facility everyone is having a hard time medicating her.  Her hospice nurse told me last week that mom is her only walking patient.  My mom does laps all day around the facility.  She never, ever slows down and doesn’t sleep much either.  It is exhausting to watch.  Sooner or later she will run herself into the ground.  Of course we can try different medications to help slow her down, but all come with their own gamut of lovely side effects.  It is a never ending battle to find the “right” medications.  I honestly believe at this point it is unobtainable.

I am working on giving this burden to The Lord, but trying to do everything on my own is what I do.  I have some amazing friends that truly love me and I have no clue what I would do without them.  Two of them most recently have gone over and beyond and have been such a light for me during this dark month or so of my life.  Jennifer and Christy, thank you both so much for pouring into me.  Your love and the love that He shows through you has helped me more than you know.

This battle is far from over.  Hurt and heartache are bound to be plentiful ahead, but I am staying firm in my faith.  The beauty of this life is that we will always have trials and tribulations.  God didn’t make this life on earth easy.  It is what you do with the obstacles that we are faced with that defines us as humans.

“Trust in the LORD with all your heart and lean not on your own understanding;

in all your ways acknowledge him, and he will make your paths straight.”
Proverbs 3:5-6

We are a little over a month away from the Alzheimer’s Walk here in San Antonio,TX.  Will you join me in my fight to raise money?  To battle this disease head on and shout from the rooftops and heighten awareness that this isn’t an “old persons disease!?”  To collectively gather funds so more research can be done so we can eradicate Alzheimer’s!?  Let’s put an end to this painful disease that is stealing away our Grandparents and Parents.  Let’s make sure our children don’t face this same battle… Join Melanie’s Memories Matter today!

http://act.alz.org/goto/mmmtexas

*If you will not be able to attend the walk with us on September 26th you can still donate to our team in honor of my mom or in memory of your own loved one!

Slipping away

This was my mom and I last May on the Texas coast.  The beach has always been her “happy place” and I wanted to get her there before the disease progressed too much.  This was my moms last trip to the beach.

A few weeks ago the Today’s Show did segments on Alzheimer’s for the week in honor of Alzheimer’s awareness week.  One day they had Seth Rogan and his wife on.  She said something that burned into my soul and I don’t think I will ever forget it.  She said, “While all of my friend’s are becoming best friends with their mothers, I fed my mother dinner on Sunday.”
Smacked.
I literally felt as of I was slapped on the side of my face and did a happy dance at the same time.  I am not alone.  I always find myself thinking that I am fighting this fight with Alzheimer’s alone.  The only 32 year old daughter going into a facility to visit her mother.  The only pregnant mom waddling in and out of the memory care wing, trying not to walk out in tears because her mother told her she was getting fat and she needed to loose some weight.  Wow. There really are others.

I have decided to start really fighting.  Fight for awareness.  Fight for a cure.  I will not keep quiet in embarrassment anymore about what I am going through.  No child that has yet to have had their own children should have to get the terrible news that their parent will slowly be ripped away from them. Memory by memory.. lost.
Most people don’t realize that Alzheimer’s is no longer a “old people” disease.  It is starting to effect more and more people in their 40s, 50s and 60’s.  Entirely too young.  It is now being said that 1 in 6 people will die from it.  Yet the funding for a cure is NO WHERE close to what it should be.  If more funds aren’t allocated it will take longer and longer to figure out how to stop it.  It is said that every 70 seconds someone develops Alzheimer’s.  As many as 5.4 million people in the US are living with the disease.  And Alzheimer’s is ALWAYS fatal, something I never realized before.  We have to find a cure… soon.
It seems like the easy thing to do to sit back and be silent about how this has effected myself and our entirely family, but I am not taking the easy way anymore.  People need to know that this could just as easily be their mom or dad.  The younger forms of the illness seem to progress much faster.  My mom last year at this time was way more lucid.  As the months pass, the memories are becoming more and more few.
Last week was my first indication that she may be moving towards a latter stage of the disease.  She got angry with me, very angry.  And anyone who has ever known my precious mother  knew she didn’t fly off the handle and yell at people ever, if at all.  Especially in a public place.
I had to take my mom shopping because in the 9 months she has been in the memory care facility she has gained at least 20#.  It’s ridiculous.  None of her clothes are fitting her and I had no clue what size she was, so she needed to be with me.
She is also having a hard time walking because she says her knee has been hurting.  It seemed like eternity for her to walk from the parking lot into the building.  I honestly think it is the extra weight she is carrying around and at 4’11 you aren’t built to be over weight.
She kept looking into the back seat and wondering where the baby was.  We had just dropped Addy off at my in laws.  The silver lining here was that she remembered there was a baby!  🙂
She likes to go to the restroom entirely too often.  I think it is more of a “security” thing and she feels like she has to be in there?  Haven’t quite figured that one out yet.  Its honestly extremely aggravating to be on one side of the store trying to get this shopping trip done and have to stop what we were doing to walk her to the bathroom.  She can no longer find places like restrooms on her own.
And of course every few minutes she asks if she is going to be in trouble for leaving the facility.  Being out of her element is extremely stressful for her. Getting her into a public place is exhausting.
My adorable mother who always looked so cute and put together is now down to wearing shirts that have no buttons that have to pulled over her head and elastic pants.  At 63 I feel like I am dressing my grandmother.
Once I felt like I had plenty of different options for mom to try on we went into the dressing room.  She immediately wanted to sit down.  I had to explain to her she couldn’t sit and needed to stand to try on clothes.  She very nicely stated she didn’t need to try on the clothes I had in the room with us because she liked what she had on.  “I understand you like those clothes mom, but we need to try on a few more.”  “Why,” she says.  “Because you need new clothes.”  She then looked at me and said I just want these.”  I kept my cool and got her to try on a few shirts and with each one she got more and more agitated.  Once I got to where she needed to try on the pants she was about to blow her top.  She then started screaming at me, “I don’t want to try on any damn pants!  I want to take my clothes home and go!”  Now realize we are in the middle of a Kohl’s dressing room with a ton of other people.  She then proceeded to yell… “Why I was doing this to her, she hated these clothes,  she didn’t need other clothes, she wanted to leave NOW etc. etc.”  I was horrified.  This wasn’t my mother.  She looked like my mother but was a stranger in every other way.  My affectionate, sweet and kind mom was gone.  
This episode for me marks a new chapter in the battle we are facing.  We are probably moving into the latter stages of the disease.
Some days I become very self absorbed and forget about mom and go about my life living as a new mom and not as her caretaker.  Sadly, taking a break every once in a while helps to keep me sane.  Then after a few days I realize I haven’t heard my mom’s voice and try to call.  It rings…and rings.  My mom will never call me on the phone again.  She will never ask me how my day was and if I am doing ok.  
My mom is slipping away…
This Saturday we will be walking to fight Alzheimer’s and I invite you to walk with us to show support for my mom and the millions of others dealing with this terrible illness.  If you can’t walk you can also donate to our team to help fund finding a cure.
If you would like to join my team and/or help fund please go to my page and sign up.
http://act.alz.org/site/TR?px=6163960&fr_id=3737&pg=personal

Praying for every family dealing with this struggle and who will go through it in the future. 

Blessings,
Tk
How I will always remember my beautiful mom.  Happy.. no worries and in control of her life & memories.