Monday, February 23, 2009

A blog about caring for a terminally ill loved one

This sucks.

My 68-year-old mom, Brenda, is dying from secondary liver cancer which began as colon cancer. I am her primary caretaker.

It is painful for her, and painful for me. The cancer is far past any hope of treatment. Being a former registered nurse, my mom has dealt with death and dying her whole life, and in her final moments she has chosen quality of life over quantity of life. I get it. Why undergo chemo treatment that would make you sick more of the time, when you may just be sick some of the time from the cancer?

Anyway, the reason I have decided to write this blog (with mom's permission) is to show others who are going through similar situations that they are not alone. And second (which really should be first) is I need help with this. I need to know I am not alone. I have never done this before and I usually have to do things a few times before I get really good at them. Hopefully, I will never have to 'get good' at this.

I am the imperfect caretaker. I am flawed, in the dark, scared and confused. OK, I know I am not alone. So, I am seeking out the other imperfect caretakers (and perfect ones if they actually exist) to join in this conversation. I would also like to hear from the patients themselves. You don't need to have cancer - any debilitating illness or injury will do. When it comes down to it - it is much the same. Tell me your thoughts struggles, fears, triumphs and all things patient and caretaker.

Well, I guess I should go first.

In the summer of 2008 my mom was feeling sick. She had constant diarrhea (I mean constant) and a low grade fever. She thought she had a flu she just couldn't kick. Her primary doctor referred her to a gastroenterologist (stomach\intestine) specialist. The specialist wanted to do a colonoscopy. You know, where they put a tube with camera up your bum.

I remember going to the appointment with her. When they wheeled her out we were laughing that a camera was up her bum. She was loaded from the meds and cracking up. I was cracking up that she was loaded on meds. Then the doctor walked in. The look on her face said it all. This was not good.

Brenda had two masses in her lower colon, one so large the doctor couldn't even get the camera past it. This was the cause of her diarrhea.
But we both took it in stride, made jokes, hoped for a quick fix.

Here is an email I wrote in late October:

"All of you are good friends, old friends or family, and most of you know my mom, commonly referred to as 'the Brenda'. The Brenda has been diagnosed with colon cancer. It is a tough time, and I will be her primary caretaker due to geography. While it is a serious issue, you all know me, and this has become my outlet to add a little healthy laughter to an unhealthy situation. If you have any questions feel free to ask. We do not know the stage yet, or if it has metastasized, but is has been growing for quite some time. She feels a bit tired, and has problems with unmentionable bodily functions (which I just mentioned), but is otherwise just as cocky and cantankerous as normal. We are waiting to get approval for surgery from her insurance "INsecure Horizons". Then we will know more. I will let you all know.

So, in the meantime, we have still not determined the sex of the tumor. I want to know, but she wants it to be a surprise... and since she is physically carrying it - I guess it is her choice. We have mulled over a few names... unisex of course. I like 'Avery'. She is leaning towards 'Terry'. You can clearly see why mine is the better choice. The bright side is I have a power of attorney when she cannot make decision for herself (like general anesthesia) , hence, 'Avery' it is. We have, however, agreed on a theme for our growing bundle of wonders - cats. While we have decided to forgo the traditional tumor shower, for those of you that cannot resist, we have registered at Target, Tumors-R-Us and the Colostomy Baggery (We absolutely adore the new pawprint line!)."

The humor quickly faded. It took several more weeks before we could get the CT scan. It was a few more weeks before we could see the surgeon. The waiting was hell. So was his diagnosis. She had late stage colon cancer that has metastasized to her liver. He would need to operate and she would have colostomy bag (I actually looked, there is no paw-print line). She asked the doctor if her colon could be reconnected and the bag ditched when she recovered. He hesitantly said, "Technically it is possible."

I knew what he meant. Brenda will not be recovering. She had the surgery on November 14th. It went very smooth, the eight-day stay at San Joaquin Hospital was comfortable.
But what lie ahead in the months to come would be anything but.

(To be continued)


  1. Hi, Emily:
    It's Julie Davey, your college journalism teacher. Deborah Haar Clark told me about your mother's situation, and yours, and gave me the email address of your blog. First, I am sorry to hear about your mother's cancer. I know it affects the entire family. That's why I'm writing. For the past 7+ years, I have been a volunteer/writing teacher at City of Hope in Duarte. Having had and survived cancer (breast cancer) twice, and having been a college writing professor for 18+ years, I felt I might combine those two aspects of my experiences and offer help to those who are on "the cancer journey." Long story short, hundreds of people have come to my Writing for Wellness classes--patients, caregivers, family members, doctors and nurses. Each one has a different perspective on the situation. Each one carries a burden. What I have done is develop some writing "prompts" that help them deal with what they are going through while, at the same time, offer an outlet for them to write a letter, a thank-you or just as explanation of their feelings. Sometimes they share these with one another; sometimes they don't. My book "Writing for Wellness: A Prescription for Healing" has been out since late 2007 and is on the internet. But, if you send me your mailing address, I will mail you one. You and your family members may find the stories and the writing exercises to be useful. There are sad stories of course, but there are humorous ones too--written by me and 60 contributors, participants from my classes.

    You can contact me at and I will mail you a free book. It has helped many strangers; I would like it to help a former student and dear person--Emily aka LeAnne. There are stories from caregivers in there as well as letters written from family members of patients,plus the patients themselves.

    Love and hugs,

  2. I take care of someone with a liver sarcoma, who has been in remission for a while now. I say "take care" but she really takes care of me. I just administer shots every day, two on Wednesday. The other day she had glassy eyes from have a rough day of photo treatment and her two-a-day shots. I got kind of nervous but didn't say anything. Anyways, at that point I felt like an imperfect caregiver. I felt like what if all these shots and freaky light treatments don't work? What do I really do to help? Me, with my shaky hand, giving shots like some kind of rent-a-nurse. I felt like the idiot who needs guidance (though as I mentioned in another post I'd throw your Idiot's Guide against a wall). Tell your mom I said hi and that I hope she finds mashy beets!

  3. I will Nick - I recall you talking about the illness before. I will be honest... before this, of course, I always knew cancer sucked. My grandmother had breast cancer when I was young, but she had a double mastectomy, no chemo, and it never came back. So, I didn't get the full life-changing, devastating cancer experience.

    Before we are exposed to a loved one with cancer (or any other serious illness or injury), I believe we sympathize, but not empathize. Now, I empathize.

    And hey, remission is a good thing, a great thing! I'm sure she appreciates your shakey hands (just lay off the coffee).


  4. Hello Emily. It's me Roni. Wow I am so sorry to hear what your mother has been going through,and of course yourself too. My father passed away on July 18,2007 from congestive heart failure as well as from an enlarged heart. Yes, I do know about the dreaded book from Hospice; however, I refused to read it. I was not his caretaker, my mother was. Therefore, she read the book from cover to cover. She would tell my sister and myself, "Look! There's another sign!" I would tell her, " I don't want to hear it." I didn't feel that I needed to read the book to see the signs (the signs were all there). Everyday as my kids and I visited my father, we made the most of the time we had left together. The hardest part for us was not knowing when his day of passing would come. With that said, it is most important for you to take advantage of time you both have together. I'm here for you.

  5. Emily,
    I so admire your courage, I will keep you and your mother in my prayers. I have no experience to share just that I am blown away by your strenght and dedication to the one you love. I hope that faced with such decisions I can meet them head on like you are doing. You truly have inspired me.
    Gus S.
    (Old School Fullerton)