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A caregiver's advice: How to help a dying patient's family

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hands CW how to helop.JPGBy LeAnne Gibbs

My husband, Francis, has stage IV colon cancer. Since his diagnosis, many people have asked how they can help.

Last week I shared advice on what to say and how to support a cancer patient and his or her family.

Here are a few more things we've found beneficial. 

I'm still me even though the cancer will take me/my spouse. Please don't let it take you from me/us.

We've needed time and space to deal with the bad news about Francis's cancer together as a couple and a family.

I've asked for this on my personal blog and sometimes silence phones and unplug laptops.

We still feel a great need to pull the plug and pretend to be hermits now that we're home and reconnecting with friends. 

After all, Francis still has some recovery from the surgery alone, and the side effects of late stage colon cancer are new each day.

Francis has frequently commented about the pain of fading away and things related to it.  
I can identify only through the collective "we" and the current "I" that I know are fading away as well. 

Watching your spouse and the "we/I" I love fade away is painful enough, but then the things that make us who we are as individuals and who we are as a couple are also being lost. 

To say that we need to hear from and visit with family and friends is an understatement even in the most hermitic of moments. It keeps us sane. 

It allows us to focus on the good in life, provides us a break from each other -- yes, I still can get on Francis's nerves and he'll admit he can be a difficult patient -- and gives us the luxury of a laugh when we desperately need some comic relief.

"Let me know when I can take the kids/watch the kids/come play with the kids ..." 

This is the hardest for us. We probably worry more about how this is impacting them now and how it will affect the course of their lives in the future. 

It's what keeps me up at night and makes me most frightened about a future without their father.

We were fortunate to have a brief meeting with a psychologist at MD Anderson where we could discuss the children and how to do right by them. 

She encouraged us to keep caregivers to a very small number (three or four) and keep to their current routines as much as possible. 

These things help both our son and daughter feel loved and secure in a world that will be full of change.

I'm inclined to be extremely protective. It isn't because I don't want people to watch them or play with them, but because I want to protect them.

In all of my protectiveness, I also realize that what keeps Francis and me anchored to joy and hope for the future is the sound of Couper's little bare feet running across the hardwood floors between his room and ours, and the wrinkled-nose, five-toothed smile of Riley when she wakes from her naps or turns around and catches us watching her. 

Having them with us protects Francis and me probably as much as we protect them.

LeAnne and Francis Gibbs live with their two young children in Tallahassee, Florida. They share their journey with Francis's aggressive form of stage IV colon cancer on their blog, Our "Semi" Colon Life.

Related Story

Caregiver advice: What to say and how to help

Resources
How to talk to a child about loved one's death (podcast)
Patient and family support at MD Anderson

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