Starting On The Road to Hospice

My migraines had started to come back and I knew it was because of stress so I made an appointment with my doctor.

The next morning I had appointment at eight with my doctor and was able to leave Mary for two hours knowing that my parents would be home to care of Mary. 

         As I sat in his examination room I was on edge because I didn’t want to be gone from home for too long.  It was just a couple minutes that felts like hours when my doctor came in and said,

         “Emilia, what’s going on?”

I looked at him and just broke into tears and just started crying.

         “Emilia, what’s wrong?” asked the doctor

         “I’m getting migraines and they don’t go away,” I cried.

         “Again I ask, what is going on Emilia?  What do you think

         are causing these migraines?” questioned my doctor.

         I don’t know,” I answered.

         “What is going on at home?  How is your family?”   
        “Mary’s MS is getting worse, she had a G-Tube placed

         because she kept vomiting but the problem is she is still      

vomiting  and no one can give us an answer on why it’s happening. My mom and I have been talking about hospice but we don’t know if we should,” I answered.

“If your family is thinking about hospice, maybe it’s time your family should consider it since your sister doesn’t seem to be improving over all in her health,” said my doctor.

I just started to cry even harder, the thought of my sister passing away was unconceivable to my parents and I.  We kept hoping that Mary would get better or get to a point to where Mary’s downward spiral of her health would just stop.

         My doctor then gave me a business card and pamphlet to a hospice company that he referred to his patience's.  Hospice, the word didn’t seem real to me, I always heard other families dealing with a family member being in hospice but never imaged it happening to us.  I took them information home along with a prescription for my migraines.  Driving back home all I could think about was how am I going to bring the subject of Mary being in hospice to my parents and even more so how to talk to about with Mary.  

         When I got home and parked the car in the garage, took a deep breath and walked into the house to find my parents in the living room, sitting on the lift chairs, drinking their morning coffee and watching television.

         “How’d it go Mija,” ask my dad

         “Okay,” as I walked into Mary’s bedroom.

         “Hi Mamas, I back from the doctor, are you okay?”

 I walked up to her bed and gently took her hand, Mary

 just looked at me and smiled and looked at my with her huge brown eyes,

“Oh Mamas, I love you so much.  You know that right? You know how much I love" I said

Mary smiled as tears ran down her cheeks and she tired to blow me a kiss.

         “I just wanted to let you know that we love you very much and mom, dad and I will always be here for you know matter what,” and I laid tenderly my head on Mary’s chest and softly cried.  I could her her heart beat so slowly, her chest rose gently up and down to the rhythm of her breathing.  I wanted things to go back to where Mary would have her independent back to the point were she would be, talking, walking, just being her old self.  I wanted to hear her laughter and see her living life the way she used to be but I knew she couldn't and it killed me inside, this pain of helplessness was truly unbearable  that it pierced right through my very soul. I lifted my head off Mary's chest, kissed her cheek and then wiped the tears from my eyes and Mary's too.  

Before I left Mary’s bedroom I make sure I Love Lucy was on television and told Mary that I would be back in a little while,

Mary just smiled at me and  then turned to look at television.

         I walked into the living room determined to show my parents the business card and pamphlet my doctor has given me.  I think this was one of the hardest things I have ever had to do in my life.

         “What are you guys watching on T.V.?”

         “The news,” answered my mom.

         “How’d it go with the doctor, did he give you anything for 

         your headaches?”

         “Yeah but he also gave me something else,”

         “What did he give you?” asked my dad

         “A pamphlet,” I said

         “Is it a pamphlet on migraines?”

         “No dad, it’s about a hospice service, it’s for Mary.”

A dead silence filled the living and all you could here was the sounds coming from the television when    my mom said,

“What the hell do we need a hospice for Mary? She’s going to get better,” insisted my mom,

“Is she mom? Really, is she?  How much more are we going to put Mary through?  She doesn’t want to go back to the hospital and our options to fight MS are running out; what choices do we have?”

“ No!  I’m not ready for hospice, Mary is not ready for hospice!” said my mom.

My dad just was silent as his eyes started to fill with tears.

“I’m not ready either but if we truly love Mary, we need to do what is best for her, no?  We tried plasmapheresis treatments, the only two other options are too high of a risk of side effects because Mary’s stage of MS is so advance.”

My dad final spoke and said,

“What does the Catholic Church say about hospices?  We need to call Father Larry or Sister Susan and talk to them about it then we can have a family meeting about  this hospice.”

“Your right Tony, first we talk with either Father Larry or Sister Susan,” answered my mom

“That’s fine, I just think that it’s time for us to think about quality of life for Mary because I have no idea what to do next,” I said and broke down crying,

“I love Mary but what I hate  to see her suffer, if hospice can ease her suffering then I am for it,”

“You don't think it's hard on me?  It’s hard for a mom to see my child suffer and not be able to do anything to help her, to ease her pain!” cried my mom.

“Then, Emilia you call the church and make an appointment then we will have a family meeting on where we go from here.”

I walked into our kitchen to get the phone and spoke to Fr Larry, he told me that he was willing to come to our home and talk to us about placing Mary in a hospice program.

The following day, Father Larry came to our home and talked to us about the Catholic Church’s view on hospice.  As we all seated at the dinning room table, you could feel the tension in the air.  Father Larry told us he knew all what we have done for Mary and he understood that medically we had done all we can for her.  However the Catholic Church will support our decision in placing Mary in a hospice program.  We all started crying, Father Larry had known my family for over 20 years and he knew what a hard decision it was for us to come to this conclusion. 

“We just don’t want to do anything against the Catholic Church teachings,” said my dad

“Your not Antonio, this decision is being made from love, the love you all feel for Mary.  I understand that and so does God,” said Father Larry,

Father Larry got off from the table, as did we and walked into Mary’s bedroom.

         “Hi Mary, do you know who I am?” smile Father Larry

         Mary’s lips mouthed, “No,” and started to cry,

         “Mary, my name is Father Larry and your family invited me

         to come and pray with you, is that okay?”

         Mary’s lips read, “O.K.”

 We all gathered around Mary for the Anointing of the Sick Sacrament.   As he prayed, it was so hard for any of us to respond, our voices cracked with emotions but half way through we focused on Mary and kept praying with Father Larry.

After the sacrament was given Father Larry was ready to go back to the parish; he said good-bye to Mary and my parents; as I walked him to his car he said,

         “Emilia, do you believe Mary is going to heaven?”

I looked at him as tears ran down my face, I answered,

         “Yes. Yes, I believe Mary is going to heaven,”

         “I believe that God has a special place for Mary and her 

name is written on it.  Please don’t delay it from happening, don’t deny Mary from her rightful place in heaven,” said Father Larry,

He said this with such conviction and I knew he was right.

“No Larry, we won’t delay in any way from keeping Mary from going to her rightful place in heaven.  We just wanted to know what the Catholic Church’s teaching were on hospice,” I said,

“Good,” he said and
He gave me a hug of support, smiled at me then got into his car and drove off.

It wasn’t easy going back into the house; I didn’t think I had the courage.
As I walked in I heard my mom ask,

         “Did Father Larry leave?”

         “Yes mom, he’s gone,”

         “Well then we need to have a talk with Mary about this

         hospice and if it’s okay with Mary, we will call her

         doctor about placing Mary in hospice,” said mom.

So my dad, mom and I walked into Mary’s bedroom and we found Mary just looking at a picture of the Sacred Heart of Jesus that hung in her room.

         “What’s cha doing Mamas, looking at the big JC?” I asked

         “Yes,” mouthed Mary

         “Mary, dad, Emilia and I want to talk to you about

         something important, okay?” ask my mom

Mary’s bedroom was silent for a second as my mom started the conversation the about hospice program.

         “Mary, you have been through a lot in the past couple years and the MS, no?”

         “Yes,” mouthed Mary

         “We were wondering if you wanted to try a new drug that

         might help you but you will need to go to the hospital.  We

         would need you to have an MRI done because the side

         effect is you might get a brain infection.  If you got a brain    

         infection, there could be a possibility of you passing

         away or get worse than you are right know.  We all love

         you very much Mary and whatever ever you want to do, we

         will support your because we love  you so much. Do you want to try this medicine?”

My mom just started to break down and cry as Mary did too.

“Mary, did you understand what mom was asking?” asked dad.

         “Yes, “

         “Do you want to try it?”

         “No,”

         “Are you sure?”

         “Yes,”

         “You do not want to try a new medication?”

         “No,”

         “Is it okay for you went to the hospital just for a little

         while just so you can  try the new medicine or get an

         MRI done?”

         “No,”

Then Mary mustard all her strength and softly whispered,

         “I don’t want it any more, I’m tired dad,”

My dad just broke down and started to cry, and then it was my turn,

“Mamas, if there was a way for you to be home all the time and not go to the hospital or take anymore new medicines, would that make you happy?” I asked

“Yes,”

“There is a program named hospice, hospice will make sure you are okay because a nurse will come and check you every week.  The hospice program will also get all your medicines liquid so we can put them in your G-tub and another nurse will come and help me give you a bath, it that okay?”

“Yes,” mouthed Mary.

“Okay, Mamas.  You don’t want to go to the hospital anymore and you don’t want to take anymore new medicines, right?” I said,

“Right,” answered Mary as tear started again to run down her cheeks and land on her pajama top.
"Aye Mamas, why are you crying?  You won't be going anywhere, you'll just be home with us and we can get someone to help take care for you.  We just want to make sure you don't want to try any new medicines because if you do we will call the neurologist but if you don't want to that's okay. Can we call hospice to help you. It's okay if we call hospice for you to help us?"

“Yes,” answered Mary.

“You’re tired Mamas and you just want to be home, right?”

“Yes,”

“No more hospitals, no more poking with a needle, no more being away from home, right?”

“Right,” answered Mary

Then I started crying because I knew Mary was saying the truth, she was tired and just want to be home.  Home in her own bedroom with her purple stars shining,  holding her Eeyore pillows and surround by the people she loved so dearly.

“Well Mija,  thank you for helping make the right decision for you. We are going to take care of you the best way we can, okay?” asked my mom

“Okay,” smiled Mary.

“Well, I’m sure your tired from all this talk and Father Larry’s visit so we’ll leave you so you can take a nap, okay”

“Okay dad,” answered Mary.

We all kissed Mary and each of us told her how much we loved her.  Mary just smiled and closed her eyes, as she was so ready for her afternoon nap.

As my mom, dad and I walked back to the dining room table and sat back down, we all had such solemn faces and just stared at the family pictures that hung on the wall in the dinning room. Remember better days when Mary was a baby, when she was in elementary school and pictures of her when she was an adult, family pictures that reflect better and happier days.

         “Well, where is that hospice pamphlet?” asked my mom

I walked to the computer desk and took the pamphlet from a stack of papers and handed it to my mom.

“How do we do this? How do we start this? How do we know we are making the right decision!?” cried my mom,

“We are making the right decision, Mary wouldn’t have it any other way, you heard her answers Mom,” I said

“I know, we all heard them Emilia but it’s still not an easy decision to make.  We never thought in our furthest dreams that we would have to be in this situation,” said my dad.

“I know dad, I’m sorry mom; it’s not easy for me either.  Mary is my younger sister and I thought even though she has MS, I always thought Mary would always be around,” I said,

“Emilia, can you please call Mary’s primary doctor and talk to him about our family decision. I just can’t bring myself to do it even though I know it’s the right decision to make; how about you Tony, do you want to call the doctor?”

“No,” answered my dad.

"I'll I call him and we will see what we need to do to get the process started for Mary,” I said.

I got the phone and spoke to Mary’s doctor about a hospice program for Mary.  At first he wanted to talk with my mom or dad and after a few minutes the phone got handed back to me.

I put the phone to my ear as I heard the doctor say,

         “Emilia?”

         “Yes doctor, it’s me.”

         “I just want you to know that I admire your family’s love and

         courage it must have took to come to this decision about

         Mary.  Your parents told me that Mary is fully aware if this

         decision.  In my experience, most patient’s family keep

         putting their family member through so much pain and

         agony just so the patient can live a little longer.  They

         just think of themselves and how they would not be

         able to live without their family member. I know it was
         not  an easy decision to make but I feel it is the right one.  

         Give me theinformation on the hospice company of your family’s

         choice and I will get the process going for you. However, I want you to know

         that I will no longer be Mary’s doctor once she enters

         hospice because they have their own doctors.  However,

         my thoughts and prayers are with Mary, your parents and  

         you.  Please keep me updated if you don’t mind, okay?”

         “Yes doctor, I will keep updated and thank you so much for   

         your understanding,” I said

         “Your welcome and God bless you all.”