Tuesday, September 28, 2010

A Simple Hug


Hugs are amazing, aren't they? I think a hug from someone who loves you is a hug from God.   Each hug I received is a gift from God because they always seem to come when I need them the most. When I'm tired, weak, frustrated, scared or even when I am joyful or happy. A hug reenergizes me, gives me hope, brings me to tears and opens an opportunity for a moment to stop what I'm doing and just pause.  
The ones I receive from my mom are priceless.  Her small arms shake and she barely has enough strength in them to pick them up and wrap around my waist. Every one I receive from her is kept in my heart.  At times I close my eyes and I could feel her arms around me with such love that my eyes fill with tears just thinking about it.  
My dad's hugs feel very gentle and never overwhelming. It is surprising at times because he does not like to show much of his vulnerability. My dad was always very solum and did not like to show any kind of emotions because he was very old school.  Being raised by a single mom had it's challenges and I feel made my dad hard as a rock when it came to showing emotions.  Some of the hugs I receive are so full of support and strength that I know they would catch me if and when I fall.  These are one of many gifts I have received in my life and I am humbled and grateful for them. 
The one hug I miss the most is from my sister who has MS.   I can remember the powerful hugs she used to give so freely.  She would hug you with such love, that at times it was even hard to take a breath because her hugs where so strong.
My sister Mary would tire easily due to the MS so she always went tot bed at eight o’clock every night.   With the assistances of her candy red walkers in front of her; wearing cozy flannel pajamas and her white robe with little blue flowers she would slowly make her way to the living room to give her good night hug to our dad.  
He would be sitting in his powder blue lift chairs watching television, when he would hear her say,
“ I’m tired, I’m going to bed.”
My dad would turn to see my sister walking towards him and say,
“Oh my Mary! You’re tired Mija? Then I guess its bedtime, good night my Mary. I hope you have a restful night,”  
“Good night dad, I hope so too”
As Mary would say goodnight to our dad she would carefully let go of her walker and reach her arms towards our dad for a goodnight hug and gently kiss his cheek.
"Don't hurt me Mary!”
“Aye Dad! I just want to hug you goodnight.”
As she reached to hug him, my dad would joke,
“I can’t breath Mary, you’re squeezing too tight!”
“Aye Dad,”
After her goodnight hug, Mary would then take hold of her walker and slowly make her way back to her bedroom for the night.
Now due to her battle with MS, Mary is bed ridden and no longer has any use of her arms, legs. She no longer can talk, walk but can still give an occasional smile. So when I give my sister a hug, I carefully lean my forehead against hers and I feel the emotions of a hug that we used to give each other.
 I often do think about how my sister must be feeling by not being able to give a hug back like she used to give and at times my heart is saddened.    I know one day I will be able to hug my sister and feel the familiar vice grip of passion and love that she gave so freely.   Until then, I will be patient and look forward to that day.

Friday, September 24, 2010

A Memory that is permanently in my heart

     Mary Magdalene loved enjoyed some chili cheese fries with a raspberry ice tea, watching game shows and singing. Buying an order of chili cheese fries from The Hat is were my sister enjoyed them the most.  Game shows are a tradition in my family and my mom and sister always enjoyed watching them together.  You could hear my sister scream with excitement when a contestant on a game show would win cash or prizes.
     At first, my sister's cheering it would get on my nerves.  I would mumble under my breath "You don't know the contestants, why are you yelling?".   I didn't take the time to understand what was all the excitement all about because I just didn't want to take the time to ask.
Until one day, my sister yelled with excitement at the top of her lungs when a contestant won a car on the Price is Right.  I hurried  into the living room to find my sister yelling" They won a car mom, they won a car!"  I looked at her and said" Why do you care? You don't even know these people!"  My sister kept looking at  the television and with the biggest grin said "I know, I'm just happy for them."  The excited expression on her face shined with such delight and joy to that it was enough to to make me stop and think,  " Who was I to tell my sister whom she should be excited or happy for?"  I looked at her then looked at the contestant jumping up and down with enthusiasm and said "That's true, I guess I would be happy for them too."  as I started to feel the energy Mary was bringing into the room. My sister taught me a lesson that day, sometimes the simplest things can bring to you happiness even if the it's not your own.
     This memory was about three years ago, Mary's voice is now silenced due to her battle with MS.  How much do my ears ache to hear my sister's scream of excitement, words can not express how I feel.  Game show will never be the same but I still watch them with my sister at home.  
Now, I am the voice that yells when a contestant wins a prize as I hold my sister hand while we watch game show with our mom.  I just want my sister to know that I will be cheering for the both of us and I hope she is cheering with me.

Thursday, September 23, 2010

Mary's Battle Begins...










In February 1997, Mary’s life wit MS was taking over twelve pills a day and giving herself daily injections of steroids.  At first, Mary would have to go for a steroid infusion once a year to help give her strength in her legs and arms so she could still walk with the assistance of her walker.  Several years went on and the annual steroid infusion didn’t seem to be too effective so it was increased to every six months then quarterly and it become quarterly. 
By January of 2008 Mary Magdalene’s battle with MS had turned to the worse.   She was having trouble walking and keeping her balance to the point of her falling so we would transfer her from her bed to the wheel chair so she could be with the family in the living room.  Mary was also having trouble with her bodily functions and the bathroom was too small for a wheel chair transfer so she used a commode that was located in her bedroom. 
At first, Mary would stay in the hospital for steroid infusions and then physical and occupational therapy.   She would be gone from home for about two weeks every three months.  Mary hated steroids but not as much as she hated  being away from home. My dad would visit Mary every single day she was in the hospital; due to my mom's battle with Parkinson's it was not easy for her to get around and she would starting to become more tired by the afternoon.  I was leery in leaving my mom home alone  so I would stay with my  mom while my dad went to visit Mary.  However, on the days that we all would visit Mary, she would tell us how she would have a weird taste in her mouth from the steroids.  My parents and I would encourage her to be brave and assured Mary that she would be home soon but that didn’t seem to comfort Mary.
“I want to go home! I don’t like being here Mom, when can I go home?,”
“It’s just for a little while and we will be picking you up and taking you home as  soon as     you get better,” answered Mom.
Tears would start running down Mary’s face as she tried to give a brave smile but her lips just trembled.  You could start to see her tears start to fall on her hospital gown.  With the help of my dad, my mom would get up from her wheelchair to give Mary a huge and kissed her on her cheek.  All I could hear was our hearts braking with every tear that fell down Mary’s cheek. We all knew that this was not going to be Mary’s last stay in the hospital.  As we got back into the parking lot, I turned back to look at the hospital window of where Mary was staying, To my surprise I  saw Mary standing with her walker looking out her hospital window and waiving good bye to us.   
"Oh my God! Mary is going to fall!" I said,
"What?" yelled my mom as she turned to see what I was looking at,
"Mary, go back to bed!  Your gonna fall Mamas! Go back to bed!" I yelled.
I wanted to run back into the hospital and put Mary back in her bed but my parents stopped let  
me, they said,
"No, let Mary have her moment!  She knows what she is doing and if she want to say good night
we are going to let her." as they both waived back at Mary and smiled.
Mary just smiled and kept waiving good bye  as we drove off the parking lot, once again the familiar pain of a heart breaking as silence  filled our van on our drive back home.  When we got home, we had a message from the hospital letting us know that Mary had a fall but was okay.  After that fall, the hospital told us that Mary was a “fall risk” and had to wear a bright yellow bracelet that read FALL RISK in big black letters. 
By the end of 2008 steroids didn’t seem to help Mary so the neurologist next suggestion was a procedure called plasmapheresis treatment.  We were told that this procedure gave patients with MS renewed strength and have showed great improvement with MS patients.  We were given information and had a family meeting with Mary’s neurologist.  At the end we agreed to have this procedure done with Mary’s permission hoping that her health would improve in any way.
What we didn’t know was that the plasmapheresis treatment took two week to complete and another two week of occupational and physical therapy was to follow.   So Mary would be gone for an entire month.  Need less to say Mary was not pleased at all in being away from home for such a long period.  It was with great emotional pain see Mary go through so much, we missing her every day she was away but prayed that everything would be okay.  We hoped that Mary would have this treatment done only once. 
The first plasmaphersis treatment showed great improvement with Mary.  It had been almost a year since Mary walked and after the first treatment and with physical and occupational therapy Mary was walking with a walker, talking and keeping focused on the conversations and was more alert and energized.  It was a miracle!  We stood in shock and awe with what we had witnessed and for the first time in a long time we all had hope that Mary was going to be okay.
 We brought Mary home and had a welcome home celebration.  Our family bought some presents for Mary and placed them on her bed and we had a cake and I made my famous pasta and garlic bread, which was Mary’s favorite food.  My parents, two younger brothers and I all were home to celebrate Mary being home.
“Welcome home Mary!” we all said as my dad pushed Mary on her wheel chair into our home.
“Thanks, guys, Thanks Mom, thanks dad!” smiled Mary
“I made your favorite Kiddo, pasta and garlic bread!”
“Thanks, Emils, that’s my favorite!”
“I know Mamas, welcome home,” I said.
Every morning about eight o’clock in the morning I would get up to start my day with Mary.  However, just two day after Mary came home she was not able to stand on her own.  I held Mary at the edge of her bed and I knew if I let her go she would have fallen, she became really weak and couldn’t even sit up,
         “What going on Mamas?” I asked
         “I don’t know Emilis, I can’t sit up, I can’t stand, I can’t do anything,” as she answered, tears started to stream down her face. 
“I don’t want to go back to the hospital, I don’t want to go back!” cried Mary
“I know Mamas, I don’t want you to go back either but sometimes we have to do things we don’t like to do but have to do. “
As I held up my sister and placed her back in bed, I called for my parents to come into Mary’s room.  They came into Mary’s and after seeing Mary’s decline just after two days of being home; we were all shocked and sadden.  Mary would be gone for the month of April 2009 and July 2009 for more plasmapheresis treatments but it didn’t seem to improve Mary’s strength.  I remember my parents and I going to pick Mary up for her last stay in the hospital and the nurses where telling us what an improvement Mary has made but when we looked at Mary she still seems just as weak and tired as before her stay at the hospital.
“Mary is doing so well and I know she is happy to be going home,” said the nurse.
“Yes, we know she is ready to come home, right Mary?” asked my dad,
“Right dad, I want to go home!” answered Mary.
As much as the nurses were trying to convince us that Mary was doing better, we knew she wasn’t.   Two nurses assisted us in placing Mary in my parent’s van; they had to physically lift Mary off the wheel chair because Mary did not have the strength to do it herself. 
         “Come on Honey, move your foot!” muttered one of the nurses as she started to kick my sister’s right foot as to positions it for better leverage.  My dad was helping my mom into the van so  neither of them noticed what the nurse was doing;  Mary was being placed in the back seat of the van as my mom was being seated in the front passenger seat   I looked down to see what the nurse was doing to position my sister’s footing I shouted,
         “Hey! What the hell the are you doing?”
         “Oh, I’m sorry!  I was just trying to move her foot,” said the nurse.
         “By Kicking her foot?!? Yeah, I’m sure you were by kicking it!  I thought you said she was  
          improving?” I asked
The nurse kept quite as she looked away and the second nurse and I both assisted Mary to be seated in the van.  As we drove away I told my parents what one of the nurses did to Mary and they got very upset.  My dad wanted to drive back and tell off the nurse who kicked Mary.  However, my mom calmed him down and when we got home she called in to complain on how Mary was treated. By this time Mary have had enough with hospitals, nurses, doctors and didn't not want to be anywhere else but home with her family.   So we had a family meeting, we talked about all the treatments, steroids,  medications and seen that nothing seemed to help Mary improve in her fight with MS so we needed decided to either stop the treatments or to continue to see if Mary's health would improve in time.  Needless to say, Mary voted to stop going to the hospital and just wanted to be home. 
         The scars on Mary’s neck were dark and ugly for the plasmapheresis treatments.  First her left jugular vein in her neck was used, then her right jugular vein.  On the third treatment, the jugular vein in her left leg groin was used for the plasmaphersis treatment.  Mary never complained about the pain she experienced with the plasmaphersis treatments.     
As Mary’s health declined, the care taking responsibilities increased dramatically.  Some of my siblings spoke to my parents about placing Mary in a convalescent home, which scared the hell out of Mary.  I remember my parents and I going into Mary’s room and had a talk with Mary. We assured her that she was not going anywhere and was going to be home as long as we can keep her home without risking her health.  Mary started to cry and in the mists of her sobbing she cracked a smile and said,
         “Thanks mom, thanks dad, thanks Emils,”
 “Mija, we love you very much and promise we will always take care of you,” said mom.
We all gave Mary a hug and prayed together thanking God for bring Mary home and asking God to help us get through what ever was coming our way. 
At first my mom was caring for my sister and I would just be the assistant.  However, as time went on and the battle of Parkinson’s started to take over my mom’s abilities to care for Mary; soon I became the caretaker for my sister.  I think that was one of the hardest challenges for my mom, not being about to care for Mary due to Parkinson’s.
My mom and I would have some major battles because it was so hard for my mom not to be a mom. Her balance and loss of strength in her hands and arms started to become a challenge but she determined to care Mary.  There were a couple times where my mom almost lost her balance but grabbed Mary’s hospital bed rail to keep her balance as I would just stand in the background and wait until I might be able to assist.
“Mom, let me help Mary,” I asked.
“No! I can do it!” snapped mom
“I didn’t say you couldn’t it, I just wanted to help,”
“No. I’m Mary’s mom and I could do it!”
I can’t image what heartache and struggle it was for my mom.  She was Mary’s best friend and always took care of Mary and Mary had complete and utter trust in my mom.  As weeks turned to months, I gently started to take over caring for my sister.  However, I always had my mom by my side to assist me in caring for Mary.  At times I would catch my mom crying as she looked on while I cared for Mary,
         “I can’t do anything! I feel so useless; I’m sorry I can’t help you more,” cried my mom.
         “Mom, just your being here is help enough, you are my moral support whether you know it       or not.  I need you here with me and so does Mary, right Mary?”
         Right!” said Mary with a smile.
         Every morning about eight o'clock I get up to start my day with my sister Mary Magdalene.  She was usually sleeping but cracked a smile when she heard me say,
"Good morning my Sleepys, how you'd sleep my Sleepys?”
"Fine, no nightmares."
 "No nightmares, huh? That's nice Mamas,"  
The sun would be cracking through her bedroom window blinds and would give such a warm gentle light to her bedroom.
“What do you feel like wearing today Mamas, how about some fresh flannel bottoms, matching sockies and a warm cozy top?”
Mary would smile and then say,
         “Okay.”
Changing my sister for the day was a process so after the attire was picked out for they day. First I would change her adult diaper with a fresh new one.  Change her into her fresh clothes for the day. Wash her face with a warm washcloth, brush her teeth, use a little mouthwash then comb her hair. After that I would place her in a sling then hook up the sling onto the Hoyer Lift and roll her to the living room to watch television with our mom.  
Once we got to the living room, I would carefully a line the Hoyer Lift to her lift chair.  Slowly I would release the air from the hydraulic chamber and Mary would gradually be seated.  She was still able to sit up by herself at the time so I would take the sling off the handles and roll the lift to the opposite side of the living room.  Then cover her up with a blanket so she would stay snuggled and warm and place her Eeyore pillow under her arms.
Then I would have to give my sister her daily dosages of medications and cook some soft scrambled eggs for breakfast with a glass of juice.
At ten o'clock was the Price is Right, then the local news, followed by two hours of I Love Lucy, then shows on the Game Show Network.
By the afternoon, Mary would be tuckered out and I would place her back on the lift and place her in her room for a nap; this would be the weekly routine.  On the weekend, my sister usually watch what ever was on the Game Show Network, she loved game shows.  During the football season, she loved to see the Minnesota Vikings or the Washington Redskins play on television or a Dodger game during baseball season.
As weeks turned into months then years, the MS became more aggressive and my sister experienced more episodes as the plaque slowly grew in her brain which eventually attacked her nervous system. At times, Mary just has enough strength to open her eyes and surprise me with a small smile.
I often wonder what my sister dreams about when she sleeps.   Are the dreams of times of when she had healthier days?  Are the dreams of her family and happier times? I often wonder how brave and strong is my sister?   I guess I will never truly know. However, what keeps me going every day is the fact that my sister is alive now and every day that she is here with us I will celebrate each day with her.

Tuesday, September 21, 2010

I Wish I Could Do More For You

Everyday is filled with different challenges that come in caring for my sister Mary Magdalene and meeting all of them can seem very overwhelming at times.  There's cleaning my parent's home, cooking breakfast,lunch and dinner  along with the daily care of my sister who is in hospice.   Dealing with the changes of my mom's physical, mental and  emotional state while the Parkinson takes control of her entire life as each day passes was another challenge in my life that I wasn't sure if I would be able to take on after seeing what Mary Magdalene was going through.
My sister was not a person who complained or was very demanding. However, if you looked into  her enormous brown eyes, they would reflect an passion of pure strength, love and at time fear.
 Every once and a while as I would walk into her room to check on her I would find her crying.
I never heard a sound but the trembling lower lip and streams of tears spoke volumes.  As I  walked up to her hospital bed and gently hold her hand and asking her if she is in pain.  The challenge was that Mary Magdalene wasn't able to put into words what she is feeling or thinking about because the MS had been pretty aggressive so she was not able to speak.
      "Blink Mary if you are in pain, blink for me Mamas. One blink for yes or two for no" I asked
Mary's tears flowed down even more and after a few seconds  Mary gave one blink of her big brown eyes.  However, it felt like forever to get an eye blink but I just needed to be clam about it.
Carefully, I would lean my forehead against hers as I would gently hold her hand until the tears stop rolling down her face.  I couldn't give her a physical hug anymore because it caused her too much pain to a forehead hug had to do.
This is one of the most helpless feelings in the world, not being able to be sure if I am are doing the right thing in comforting my sister as she slowly deteriorates.  Her bones are starting to appear underneath her flesh because her system can only process very little of formula through a g-tube.  I struggle with the feelings of helplessness, venerability of seeing inevitable and not being able to stop it.  Fear of feeling inadequate in caring for my sister is just at time too much to bare.  All I keep saying to myself,
     "I wish I could do more for you Mary but I don't know what it is?"

Monday, September 20, 2010

So My New Journey Begins......

The four-bed room home my parents rented from a slumlord had a leaky roof for years.  Instead of fixing or replacing the roof with a new one, the slumlord just bought a huge brown tarp and told my dad to place it over the roof when it rains.  On November 13, 2006 the sky was gloomy and dark, you could smell the rain that was going to soon fall.  So my dad and my youngest brother wanted to make sure the tarp on the roof was secured for the next rainfall. They placed an aluminum ladder against the back of the house and my brother Joseph was the first to climb up on the roof.  My dad climbed on the ladder after Joseph was on the roof. As my dad placed his footing on the roof and pushed him off the ladder to get on top of the roof the ladder shifted off balance and fell and so did my dad. My dad landed flat on his feet from a ten-foot drop and shattered both his ankles.  I had a message on my cell phone at work that afternoon and remember the fear in my mom’s voice when I heard the message.
“Mija, please come home, come home!  Your dad fell off the ladder    and they are taking him in an ambulance to the hospital.  Your brother Joseph went with him in the ambulance to the hospital. Please come home!”
I hung up my cell phone and just trembled and became disorientated for just a moment.  I called my supervisor and explained my family emergency and a few minutes later I ran to my car and zoomed home.  What’s ironic about this moment, for the life of me I can’t remember how fast I was driving and what direction I took to go home.  I just remember getting in my car and the next moment parking in front of my parent’s home. 
         I ran in and found my mom’s face pale and her whole body trembling as I wrapped my arms around her and she started to cry.  I seen my sister Mary walking down the small hallway with her walker and said,
         “I’m ready, let’s go,”
         “”Okay Mamas, let’s get you guys in the car and head out.”
I carefully directed both my mom and my sister towards my car and ran back to lock up the house.  We recited the Rosary on the way to the hospital.
I remember walking into the ER with my mom as the rest of the family waited in the waiting room of the Beverly Hospital.  My mom walked to the nurse’s station of the ER while I looked around for my dad.  I found him on a gurney in the ER and was in excruciating pain.  His paints were in shreds and you could see the swelling and bruising of his injuries on both legs. An IV was already placed but the morphine did not seem to ease any of his pain.  As the monitor he was connected to kept beeping keeping track of his vitals, he looked at me as his eyes filled with tears as he said,
“Where is your mother? Don’t let her see me like this; I don’t want her to get nervous. Where is Mary?  Who is going to take care of mom and Mary?”
         “Dad, don’t worry about that, let’s just see what is going to happen to you, okay?”
         “Promise me you will look after them until I get better, I am so worried about them. Who is going to take care of them?”
I couldn’t have been so proud of my dad as I was at that second, even though my dad was in so much pain, he was more concerned about my mom and Mary instead of himself.
 It took five months hospitalization and convalescent care, four operations before my dad completely healed and was ready to come back home. When my dad finally came home he was never the same physically, emotionally and mentally.
 I knew he couldn't care for my sister and mom like he use to before the fall; he had to learn how to stand and walk again.  One year later from the time of his fall, he started to get his confidence to drive.
He was my caregiver to my mom, who was diagnosed with Parkinson seven years ago and for my sister, who was diagnosed with MS thirteen years ago.   During this time, I used all my vacation and sick time, took the Family Leave Act to care for all three.  
 At this time my sister Mary Magdalene was pretty independent even though she was diagnosed with MS on February 14, 1997. She would putter around the house with her candy apple red walker from her bedroom to the living room or to the kitchen but by the afternoon she would be ready for a nap and feeling pretty fatigued.  She would need a wheel chair if we need to go doctor appointment, shopping at the mall or grab a bite to eat. 
Mary would get physically exhausted easily during the summers.  Hot weather would not be kind to her due to MS.  During the hot weather, Mary would remain in her bedroom with the air conditioner set on high to keep her room cool.  She had a huge selection of DVDs, cable and my mom who would sit with her to keep her company.
My mom and her personal challenges with Parkinson didn’t stop her for caring for Mary since their relationship based on love and trust.  My mom helped Mary with everything and Mary would do the same for my mom.  I always called them the Thelma and Louise of the family because while I was at work and my dad was in the convalescent home, they would go on their driving adventures.
During this time,in the back of my mind, I just kept asking myself "Who will care for my family?"  My dad's injury not only changed my dad's life, it changed my mom, Mary and mine's as well because I had no one to care for them on a daily bases.  On April 4, 2007, I made the decision and left my career at a credit union that I had worked for almost ten years to care for all three family members.   My dad had to learn to gain his confidence to walk and  to stand on his own; a year after his fall he finally got the courage to drive again and has been driving since.  My mom’s health started to decline, simple things like bathing, cooking, changing her cloths became a challenge for her, Mary needed some one to take her to all her doctor’s appointments and run errands for her since my dad was still healing from his fall. 
Deciding to quite my job and care for my family wasn't hard for me to make but I didn't realize the challenges that were coming my way.   I had to sell my car, close my checking account because I had no source of income.  I wasn't able to go and come freely to spend time with my friends, you loose some so-called "friends" and find out who are truly your friends.   I didn't realize the personal challenges that I would be facing as time passed in caring for Mary, it's so overwhelming in seeing a family member slowly deteriorate.  As time passed I became a whirl wind of emotions because as I seen my sister look somewhat healthy and as  time passed she became completely helpless, dependent and so venerable.
On October of 2007 my family moved out of the house that was owned by the slumlord and bought a home of their own.  Mary already had picked out her bedroom with the walk in closet while Joseph and I took the two other bedrooms.  My parents actually had a huge master bedroom for their own private bathroom. For the first time in our family’s life we had central air system. Our beagle Penny had a huge fenced in backyard filled with grass instead of concrete. 
Everything seemed to be behind us as we started to settle in our new home.  However, little did we know that in January 2008 my sister Mary Magdalene would have the battle of her life and we would all be accompanying her to the end.