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Waiting...Afraid...Anguished

My mother (i have always affectionately called her Mommy) is 75 years old.   It's 1:00 a.m. on Monday night and I am sitting next to her hospital bed, watching her sleep, because I cannot. 

In April of 2009, my mom was diagnosed with Non-Alcoholic Cirrhosis of the Liver. We don't know how she got it, but she wasn't a drinker, like most people assume when they hear "cirrhosis".  When she first told me, I was concerned but knew she was seeing doctors and getting treatment.  Apparently the disease was advanced and her doctors didn't catch it.  I would ask her how she was feeling but never really thought to much about it or really knew much about the disease (even being a paramedic).  Then it hit me all of a sudden.

On July 4, 2009, my mom and dad came to visit my uncle for a family picnic.  When I got to my uncle's house, my mom just didn't look the same.  I had last saw her about a week earlier and what a huge difference.  She was so weak she couldn't walk, her eyes were dazed and she had that "deer in the headlight" look.  She was confused, albeit slightly, but she couldn't even hold anything in her hands.  I convinced her to go to the emergency room.  I am glad I did, her ammonia level was 98.  She spent 7 days in the hospital before they transferred her to the hospital closer to her home and there she spent another 10 days in the skilled nursing unit.  She got so much better.  They put her on lactulose and other meds to help her metabolize toxins in her body.  She went home on July 21, 2009. 

This event really opened my eyes.  I started researching the disease and even went to doctor appointments with her.  We were told she wasn't a candidate for a liver transplant because of her age.  The liver specialist said all they could really do is just slow down the disease process, but that it was terminal.  I was still hopeful that the medications and procedures were going to prolong the disease and that I still had many years with her.  I was in denial as well, I wasn't about to accept that I was going to ever lose my mommy.  We just did one day at a time.  She seemed to be doing so well at home, still weak, she did lay around a lot and she didn't want to eat much.  The lactulose kept her tied to the bathroom and she hated having the diarrhea that comes with it.  She really couldn't go anywhere because of it, so she just laid around.  I checked on her weekly, cleaned house, ran errands for them and my sister picked up a lot as well.

Then it happened, on Sunday, September 13.  Dad called me at work and told me that Mom was acting really funny.  She tried to walk out the front door with her walker and would sit on the toilet without taking her pants down.  I was concerned, drove immediately home and found her nearly unresponsive.  She would answer any question with "yes" or "okay".  I called 911 and she was taken to the emergency room.  Her ammonia level was 120.  They admitted her and started trying to figure out what caused it.  They called it hepatic encephalopathy.  The next day she was getting better, her ammonia level came down and she was more alert. By Tuesday, she was back to her old self.  She convinced me to go home and get some rest that night because I had been at her side, non-stop, since Sunday night.  I agreed, because it would feel good to sleep in a bed, instead of a lounge chair, and I desperately needed a shower.  I slept so good that night, so sound.  I got up early and headed back to the hospital, only to find mom's room empty.  I asked the nurse and she told me that mom had slipped into a coma during the night and was moved to I.C.U.  I was devastated.  When I went to her ICU room, I couldn't hardly believe my eyes.  I just kept asking "what happened?".  The next several days were a blurr.  Funny thing is what I thought about most was I couldn't remember what I said to her before leaving Tuesday night.  From then on, I told her "I love you, Mom", every time I left the room.

On Thursday, September 17 at about 8 a.m. Mom started to come out of her coma and slowly over the next two days, she regained her mental status.  Even though she looked so much better, her prognosis was grim.  The doctors had a meeting with my Dad, my sister and me.  They told us that there was nothing else they could do and that Mom was in the final stages of liver disease and it was only a matter of time before it claimed her life.  I just remember feeling so numb, my jaws ached with pain, tears flowed down my face and I sobbed.  They recommended hospice care.  At first, I was against it, because she has proved that she comes back from these events.  That whole day was nothing but crying and bargaining and begging and getting so angry.  I was so angry because I felt like the doctors were giving up on her, that they didn't want to go to the trouble of treating her.  That wasn't the case.

On Friday, Saturday and Sunday my family met with all different types of people.  Hospice, social workers, doctors. By Sunday, the decision was made.  My Mom was going home to hospice care.  She wants to die at home.  It took me those three days to accept the fact that they weren't going to do anything else for my Mom and that there was nothing I could do to stop it.  I am still numb and at times over those three days, I had periods of pure anguish.  The worst pain I have ever felt.  My eyes were so swollen most of the time, to the point that they hurt.  All day Sunday, my mother and I talked, laughed, cried and planned.  I could see the pain in my father's eyes and the anguish my sister was feeling also.  We all bonded together in the hospital room, around my mother.  We made many promises to Mom.  (Take care of our dad, take care of our bodies, be happy, be strong)  Those talks lasted through out the night as well.  I really got to say some things I needed to say.  I told her I was sorry for all the times I was mean to her as a teenager, the times I missed her birthday, the bad decisions I made even as an adult and for not spending more time with her.  I told her how much I love her and how I was so happy that she is my Mother.  I told her that she is a great mother.  I thanked her for being my biggest fan and loving me through thick and thin.

By Monday morning, September 21, I had made some peace with all of this.  Although I still suffer periods of anguish, longing for my mother, begging God to change of all this and feeling numb and just...different.  I don't feel like the same person I was. 

I am sitting now beside her bed in my hospital issued lounge chair, watching her sleep.  Examining everything about her face.  Remembering all the good times I have had with her.  Listening to her breath, wishing I could crawl into bed with her and have her hold me like I was a baby again.

Tomorrow, she goes home.  Hospice has set up all the necessary hospital equipment at my parent's house.  My sister and I have worked out a 24/7 coverage schedule.  I am afraid that I will not be able to take as good care of her as the nurses did and I will be expediting her death.  They assure me that I will do fine and my Mom worries that my sister and I have bitten off more than we can chew.  Honestly, I am a little worried about that too, although I would never let her know that.  I want my Mom's last days to be free of worry and full of love and tender care.  A part of me still is fighting this, thinking that when I get her home, I can cure her, make her all better and she will live longer. 

I am losing such a huge part of my life.  I fear that I will not be able to cope even though we have been blessed with all of this preparation time.  She won't see my son graduate, she will miss Christmas this year (I don't even want to talk about Christmas) and she is the ONLY person who never forgot my birthday.  I realize as I am writing this, that I won't be getting anymore birthday cards.  I know that sounds selfish, but I can't help it right now, I am hurting so bad.

I have cried so hard writing this story that I can't see really good right now.  So I am going to end my story now with this... y Mom is going to her real home soon to join my Nana and Gradad, my Uncle Dave, my Great-Granny Turner, my cousin Rocky and so many others.  I won't be there for awhile, but I know I will see her again at the "east gate of Jerusalem".  That is where we said we would meet.

ValhalaNot ValhalaNot 41-45, F 3 Responses Sep 22, 2009

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As I read this I cried my eyes out because I too sat by my mom and watch as the cancer took her from me and my dad. We watched her go down hill slowly for 8 months she passed October 21 2009 7 days b4 my 28th bday. Its now been almost 3 years since the good lord took her us. She told me 3 days b4 she went into a coma thatshe loved me and was so proud of the man I became. And how strong I had been. I sure didnt feel strong at that time. and then she made me laugh by telling me that she would be waiting for me in God's dojo so she cakn teach me a lesson in jujitsu I am a 4th degree black belt so you can see why what she said made me laugh. All I could was that I look foward to that day. I still cry alot when I think about her. I miss her so much. I dont think of myself as a mommas boy cuz I wasn't.

I pray you have found peace in this process.<br />
<br />
I too am watching my mother die and am sharing the experience with my wonderful and supportive wife.

My Mommy died, peacefully, at home, with me and my sister, at her side on October 19, 2009 at 12:10 a.m. She just stopped breathing. We buried her on October 22, 2009. It has been almost a month since she died and I still cry everyday longing to hear her voice or hug her. I miss her so much. I feel so lost!