Hepatitis C – The Long Goodbye
The long goodbye is often used to describe the drawn out fading of a person’s mind, who is suffering from Alzheimer’s disease.
But for my Mom, it was because of Hepatitis C.
My Mom worked as a hospital lab technician for most of her career. She remembered accidentally sticking her hand, with the contaminated needle of a sick patient.
Hep B and A were well-known and treatable. But forty years ago no one knew Hepatitis C existed. It took 20 years for the disease to rear its ugly head. They were finally able to properly diagnose her.
Hepatitis C is a chronic infection of the liver, that leads to scarring, cirrhosis, liver failure and eventually liver cancer.
She fought a brave fight. She endured two rounds of interferon and riboveron treatment, requiring self injecting toxins, directly into her stomach.
For a time after that, she seemed better. We all breathed a sigh of relief and prayed it was gone.
She called me one day from her back yard in New Mexico. Luckily she had a cell phone with her. She’d fallen down and couldn’t get up. Not because she was weak. Because of the ascites associated with her advanced Hepatitis C. Because her liver wasn’t filtering out toxins, her abdomen was filling with excess fluid. She looked ready to deliver triplets! She told me she felt like a turtle, stuck on her back. I phoned a cab to come and take her straight to hospital, then flew down.
She began another course of interferon and riboveron. Sadly, it was too late. Her doctor failed to check her liver enzymes and she’d already developed cirrhosis. By injecting herself with this hopeful cure, it put her into liver failure.
Her only hope now was to get a liver transplant. That meant she needed a patient advocate to navigate the process with her.
A nasty side effect of Hepatitis C is encephalopathy. Her doctor told me she wouldn’t know she had it, but we would. It causes confused thinking, poor judgement, mental fogginess, forgetfulness, personality and behavioral changes. My Mom got ALL of these and more.
Since my brothers both lived in Canada, the solution was for her to live near me in California. I would be her medical advocate.
Her insurance company was so happy to get rid of her, they paid for an ambulance jet to fly Mom, me and one nurse directly to UCSF, in San Francisco.
Then we began the long process of trying to get her a liver.
Every week I drove her to both UC Davis, and UCSF, to meet with their transplant teams. There were a battery of medical tests, she needed to pass, to be eligible.
The last test was a mammogram. When the results came back positive, she didn’t realize the significance it would play on her liver transplant. I did.
Her enemy never became breast cancer, it was always her liver disease. She had a lumpectomy and radiation for the breast cancer.
Then we went for a follow-up at UCSF.
As we sat in the doctor’s private office, he danced circles around my Mom’s condition. He said, “Well, if you can remain cancer free for 5 years, we can put you back on the transplant list”.
Mom was surprised, but encouraged. She didn’t understand. The encephalopathy didn’t allow her to understand. This bright, capable woman could no longer reason or think clearly.
I got furious. I demanded (politely) the doctor be honest. He looked at me askance. I said, “My mother won’t survive 5 years without a functioning liver. And you know it! You must tell her the truth. She deserves to know the truth and won’t believe it from me.”
He just stared at me. By this point I was standing at the front of his desk. The interns behind his chair began backing up.
I said, “You’re being cruel to not be honest with my mom”. I wasn’t yelling, but I was close. I felt like lunging across his desk and choking the truth out of him.
We waited. And waited.
He finally told her she would not live 5 years and would never get a liver transplant. I thanked him and helped my mom get to the car.
Our drive home was quiet. She said she understood, and she may have, but I couldn’t be sure.
She moved to be near my oldest brother, soon after I’d had her driver’s licence removed. She’d already had 6 minor car accidents, and I knew she shouldn’t be driving. I couldn’t live with myself if she injured or killed someone. Her doctor agreed. To say she was furious, would be an understatement. She called to tell me I was no longer her daughter and she was cutting me out of her will. She packed her stuff (we all helped) and moved to Canada. She wanted to live near my oldest brother.
Within 2 months I got a call. Mom had been found unconscious and taken to the hospital. She was in an hepatic coma. She was never coming out of it.
My brothers, Dad and I began to sit vigil. We spent everyday with her. Telling her it was OK to let go. We were all fine, we loved her and she could be at peace.
After 6 days I asked my Dad, why she wasn’t leaving. What was she waiting for? He looked in my eyes and said, the lesson here was for us, not her.
Another day went by. I finally suggested we get a minister to come in. Maybe that was what she was waiting for.
After the minister left, my older brother headed home to start dinner. My dad went out for a cigarette. I went to the cafeteria for a cup of tea.
My other brother, who had been estranged from my Mom for 20 years, sat with her.
As I adding sugar to my tea, it just exploded all over my hand. I knew it was a sign.
I raced back upstairs and she was gone. She chose to leave when only one of us was with her. The one she obviously needed to be with.
Happy Mother’s Day Mom!
You loved us all, and were loved, fiercely.
I’m sorry I lost you… so many years before you died.
I’m so sorry for your loss, Jennifer. It’s tragic she broke relations with you out of anger but as you say, she wasn’t able to think clearly. What a terrible health issue to deal with. You sound like a loving and devoted daughter until the end. The photos are beautiful and you’ve written this beautifully.
Thank you Lisa. I remind myself that it wasn’t her speaking, it was the disease.
Jennifer I read often and comment seldom, but had to over this gut wrenchingly real remembrance, so lovingly told. Know that there is a circle of people that recognize what your mother and you came through, as people and a family. Mostly, thank you for sharing your singular story. You make your mother proud.
Thank you! And at that comment, I’m crying again! I certainly hope she was proud. She was an amzingly strong woman who fought a horrible desease with as much dignity, as it would allow her.
Thank you so much for sharing that story – very generous of you. You look like your mother. How hard to go through her anger and rejection when you took her driver’s license away. Tough call. Very moving story Thank you again….
Thanks Georgia! Yes, the loss of drivers license signaled her loss of freedom and independence. She was furious!
Jen dear, I’m taken with the likenesses between you, your mom and your daughter. What lovely ladies with bright smiles. Your story is poignant, raw and real. I’m sorry of the loss of your mom in such a difficult way. I know that you are a caretaker at heart, and a brave one at that. Your mom was lucky to have you by her side. Thank you for sharing this powerful story.
Hope you had a wonderful Mother’s Day in Napa Valley…bliss!
xx, Heather
Thanks dear Heather. As I reflect, I am a caretaker, I was my Dad’s patient advocate as well as my brother in law’s. I better recover from writing this one before I try to write those ones! xoxo
I’m so sorry your mom went through this. What a lovely tribute. Happy Mother’s Day.
Thanks Jen. I hope yours was wonderful!
What a powerful story and tribute to your mom, thank you so much for sharing. My father dealt with heart issues and was given similar advice that he did not fully understand. It was hard those last few months, and he decided to pass at the one moment when my mom, sister and I were not with him but all together. When my sister got in the car with me and my mom to take a much-needed meal outside the hospital we all felt… something. We called the hospital and found he had passed. I love and can so relate to your last sentence in this post. Much love to you!
Thank you Alison. Isn’t uncanny how they choose when to go, and we “feel” when it happens??I’m glad you had the support of your mom and sister. xoxo
Wow , I feel the emotion Jen. Your memory is sharp. Those are tough memories. I missed her yesterday as I usually go and sit on her bench with flowers and have a chat. I can’t drive because I am recovering slowly from my shoulder surgery. I didn’t want to ask anyone for a ride, as it is a private thing for me. She is, and always will be with us all. Please don’t think you lost her before she passed. She mentioned you often, and in her state of mind at the end, to mention you, meant you where deeply ingrained in her soul. You are so brave to write this mothers day tribute. We all miss her. I love you sis
allan
I Love you Al! I’m so glad we all had each other’s support through this. And we did, because she intentionally connected us all in a loving family.
Hope your shoulder heals quickly.xoxo
Well, done!
Dear Jennifer you have been through so much as has your lovely Mother, (she looks so stylish)! You are the perfect example of looking at people and really knowing nothing about what life brings them to deal with. Bless your belated Mother, she is in good hands now.
xoxo
Karena
The Arts by Karena
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That’s very kind of you Karen. Thank you so much! xoxo
omg what a story…my heart goes to you….but I love how vibrant and lovely and strong you are now….and how much you loved your Mom…calling you in the am…XXOO
Mother’s and daughters are a powerful force. Say Hi to your mom for me:) xoxo
It’ s so very hard to watch our parents disappear right before our very eyes. So sorry you had to go through that.
Thank you Rena. It’s a drawn out pain.
You were such an amazing daughter! this such a great tribute
Thank you for that…it brought back memories. My mother also contracted Hep C, which over decades progressed to cirrhosis. (She donated a blood product, and tainted equipment infected her.) She suffered the symptoms you described and passed away in a similar manner. Hep C is a terrible disease.
I’m glad your mother and brother were able to reconcile.
I’m so sorry for you and your Mom! You do know exactly how cruel this desease is. I wish there was more education about it.
Beautiful post. The tragedy of having a loved one taken from us bit by bit is cruel and frustrating. Hep c is so brutal, isn’t it? Your mom was a beauty, just like you and your daughter. I find these “parent” days hard when you no longer have a parent. Much love!
Thanks Wendy. This has been my toughest one since she died.xox
Hepatitis and breast cancer… What a long journey for all of you. I know you read my blog this weekend. We both know what it’s like to lose our mother before she dies.
XOXOXO,
Brenda
We do and it’s a tough time.
xo
I lost my mother to alzheimer’s, July 4, 2000. She came from Arkansas at a very young age, in the back of a horse-drawn wagon. She worked hard all of her life on a farm, raised my sister and me, and touched a lot of lives in a positive way. I think all women who love their children are special mothers.
They are Sally!
A brave & brilliant piece you have written about your beloved mom. When a parent is dying it is like a part of us is dying too. It’s a tough road to go down when we see them fail and become someone we don’t recognize. I still find it hard today, after 5 years, to come to term with. You see so much of you and your daughter in your mom. I guess that’s how our mom’s live on, and that alone brings comfort. Happy Mother’s Day Jennifer and thanks for sharing your mother’s story with us all. xox
Thank you Deborah. Writing this was tough, very tough. But it has helped me look at the whole experience from a different perspective.
xoxo
Thank you for sharing what are deeply personal, emotional feelings on this Mother’s Day. This must not have been an easy post to write.
It wasn’t easy, and still isn’t.Thanks Lan
Thank you for sharing this beautiful and personal tribute to your mother. Mine was just diagnosed with Alzheimer’s last week, and we are heading down a similar road, so this is particularly timely for me. She won’t believe that she has it and is already angry with me for trying to help. Hoping that your good memories of your mother will help fill the empty places she leaves behind. Happy Mothers’ Day!
I’m so sorry to hear of your Mom’s diagnosis!! You have a tough road ahead of you. It’s taken a while for the warm memories to come back. Be strong. sending lovexoxo
Beautiful words and pictures. There is no better thing than to remember the great moments spent in life with those we love most. Thanks for sharing such an inspiring post. Blessings to you!!!
W/Love,
Tayrina from TGAWrites