When Do You Tell Family and Friends About the Diagnosis?

In Today's Dear Abby advice column--in many US newspapers --the question and opinions--about whether to tell or not tell about a serious or terminal diagnosis. The column is in response to an earlier one where a man did not want to tell.

Abby shares her readers thoughts--yes to tell because it may lead to many loving interactions and maybe some reconciliation, or no, don't tell--keep your privacy and yes, we know people do say the most thoughtless things.

All valuable and valid points. Here's a link to the column:

http://www.arkansasonline.com/news/2018/apr/05/dear-abby-man-s-decision-to-keep-cancer/?f=features

But here's what is not considered: the impact on the caregiver in either scenario.

If the patient does want to tell then that impacts the caregiver, and if the patient does not want to tell

that impacts the caregiver too. Does the caregiver have any "rights" or consideration? That can also go both ways:

Telling can mean more support for the caregiver but it can also mean intrusion and expectations from others that increase the "work load." and not telling may allow the couple more intimacy and privacy but also limit the desired support for the caregiver.

The roles are not equal. The caregiver needs people to talk to. If it isn't from a support group or family--what will be the source of support.

This may be one of the trickiest things for a couple to negotiate in a cancer diagnosis...whose illness is it and who needs what kind of support from whom.

And also a question about workplace issues: if the choice is to keep the secret or privacy of the patient can the caregiver tell at work? how do they access FMLA or time-off to care for the patient.

All this to say it's not one sided or a simple issue, and it carries its own tensions at a time when fear and tension are flowing freely.

Amour--a movie about caregiving and true love

Last night we went to see the Academy Award nominated film, Amour. You know by now that it is a film about aging and about a couple trying to manage an illness and more.

It's a beautiful film--language of course, and scenery and yes it's French so we see a very French woman being very French even as she ages and suffers. In American movies we might question a coiffure and makeup on someone who is ill but she's French, c'est la vie.

What I didn't know was how well this film would capture the tedium versus crisis of caregiving and the  spouse versus adult-child boundaries. Just for those few scenes you should see this film. But it is of course, as the title suggests, a great love story. Maybe the ultimate love story.

The take-away is also great. We talked for hours afterward about "What if.." and "When we face this...". If you have struggled to initiate those conversations about end-of-life care or preferences  or who will do what then use this movie as a way to open the conversation with your partner, children and friends.

Here is the trailer for the film. It may still be at a theater near you or on Netflix or Pay-per-View.

The Best Death

We had a talk about death last night. It was a good talk. In fact, a great talk. Death is an open conversation for us. It’s always there weaving in and out of every conversation and through our running chats about food and books and friends and politics and yes, sex.

But there was something else last night. Cancer, I’m sure, opened the conversation, but somehow we went deeper than before. We talked about the how of death, and would we help each other die, and how would we know we were ready. What part would be pain, and what part would be exhaustion, and what part would be a sense of readiness?

And all day today as I went back to that conversation I realized something new—something that has changed for me and that, maybe, is also a bit of acceptance.

For so many years—especially in my younger years—I always imagined that a sudden death and an unexpected quick death would be the very best kind. When we play that hypothetical, “How would you like to die?” game I’d always thought that a plane crash or explosion or something sudden and relatively painless would be the way to go. I’ve heard many others say, “die in my sleep” or “die in my lover’s bed” or “die in my recliner watching my team win”…all to suggest that a fast, unexpected death would be the best kind.

But today I realized that I want more from death than that. Maybe this comes from being a control freak, or maybe its because I love process, or maybe it’s because I really do want to place each of my scarves in a friend’s hands—but I want time to know when I will die. I want to know it will be six months or six weeks. I would choreograph each of those scenarios very differently. I want to say good-bye and give my things to specific people. I want to make love dying. I want to say words and hand out books.

And given all of that I realized something about cancer that I never considered before: It may be the very best way to die. Cancer, for the most part, gives warning. Many cancers have some kind of timetable. Cancer lets you have at least a little time to say, “Wow, here we go. This is really going to happen. What do I want now?”

For all the war against this thing and all the battles waged, and all the agendas that insist we should have no cancer consider this: If you accept that you will die, and you know you will die of something, cancer could be the best way to die.