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.
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.
We do and it’s a tough time.
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.
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!!!
Tayrina from TGAWrites
So beautifully written. I am sorry for all that your Mom, you and your family went through. The photo with you, your daughter, and your Mom is wonderful. Your Mom had a beautiful smile. I could see how happy she was to be there with you and your daughter the day the photo was taken.
Have a lovely Mother’s Day.
Thank you Susie. My Mom was so delighted to be there and celebrate with my daughter!! It was priceless.
Oh, my dear, I am in awe of your courage and strength. We said a long goodbye to my mom, whose dementia crept and tiptoed and then snowballed her downhill… So many times my sister and I had to remind each other that the dementia was speaking, not our mom.
I found your story moving and painful.
That is a hard thing to remember when hurtful things are said. I’m glad your sister and you could support each other!
What a beautiful post, mom! I love you.
Love you sweetie!!
What a very beautiful and poignant story. I am so lucky to still have my mother here with me and who is happy and healthy and still lives on her own at 84!
Thanks Mileah. Hug her!
A truly touching and heartfelt tribute to your darling mother. What a huge difference it makes when they leave us. You did however, despite her battles have her for longer than a lot of people and she shared in all that you had going.. I was sorry to see that she passed away, but how marvellous she had someone with her. A touching loving tribute, thank you so much for sharing… j I can see where you got your looks from, that picture is wonderful.. hugs from across the pond.. J
Thank you Jeannine, My Mom was an amazing woman!
I am so sorry for all that you and your beloved mother went through during her long decline. You have written a lovely tribute to her, and I’m wishing for you peace and love on this Mother’s Day weekend <3.
Thanks so much Lori!
I love your Dad’s words. “The lesson is for us, not her”.
Sounds as if we had similar journeys. Yours in the physical realm. Mine in the mental. I can truly empathize with your feelings.
Thanks so much Margaret!
My mother snuck out on me also, turned my back and she was gone. That was the way she had said she wanted to go, no pleas, begging, or otherwise embarrassing commotion.
Miss her daily, but she always pops up when I need her, moms are like that.
Beautiful pictures to hold onto.
Thanks Janice. They really do choose their time. It’s rather uncanny, the way it happens.
Thank you for this Jen. I just lost my s#*t at the end.
But what a wonderful description of the final months of our Mom’s life. So tragic that this disease – hep c took her vibrancy and life at such a young age of 72.
May all those who have this disease and their families get the treatments to save them Mom’s fate.
Happy Mother’s Day.
Love you Pete. I’m so glad we were all together, to support each other. I’m still trying to pull myself together after writing this.
What a heartfelt post. Indeed very moving and well told. You had a beautiful mother and I’m sure she lives inside your beautiful daughter. Poignant Mothers Day post.
My daughter resembles her a lot! She just commented on it when she saw this photo of her Granny!
What a terribly sad and poignant story.
So sorry your family went through this…..must have been hard to have her so mad at you over the driving situation….sometimes the hardest thing to do is the right thing. You took the high road.
That was really tough Bryce. For her, it meant losing her independence. It was very hard to do, but my conscience wouldn’t let me do otherwise.
Bravo Jennifer, So bravely and movingly told, often we shy away from difficult subjects like illness and death, well written and well said. Happy Mothers Day to you! Kind regards, Alison
I didn’t plan to write this post. My fingers just couldn’t stop. I guess I really needed to tell it. Thanks Alison
What a terrible and heartbreaking story. Will think of you and your mom this mother’s day.
Thanks Carol! It was a tough one.
What a loveing story about your mother. It touched me deeply. Peace be wih you this Mother’s Day.
Thank you Sheila!
Long good byes are so hard. I had one with my mom when she suffered from dementia 10 years before she passed. Such a sad but loving tribute to your mom. You were a good and loving daughter and wonderful advocate for her. Have a wonderful Mother’ Day Jennifer! xx Karen
Thank you Karen. Being a patient advocate is tough, especially when you love the person! xo
I cried. That is all I can say at this moment. I’m with you.
I’m still crying and having a hard time commenting. Thanks xoxo
Lovely words and lovely photos. In life and in dying we learn and we grieve and we go on.
oh Jennifer, what a moving remembrance story. To be an advocate for someone, is a true and precious labor of love. Happy Mother’s Day!
Thank you Marguerite!
what a beautifully written tribute to your mom! she had to endure so much!!! i have not walked down that road yet (thank God), so don’t know what it feels like. i know she must have loved you so much!!!! happy mother’s day to you, jennifer!!!!! xoxo
Thank you Cathy. This post is still making me cry!