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.