At the time CrabbyCancerMan fell ill, we lived a rather public life. We were active in our community, and enjoyed a large social circle. As well, we had jobs that had us interacting with many people, and large families. CrabbyCancerMan taught Sunday school, and many young children looked forward to his presence this week. In other words, it would be difficult to keep his illness a private affair.

With this in mind, we determined that “the best defense is a good offense.” Rather than letting the rumor mill work on overtime, we decided to send out regular communications. These e-mails allowed us to keep some control over what information was available for those who wanted to keep up with his progress.

We used the website LotsaHelpingHands to both keep people up to date, and manage volunteers to help us. With volunteers, we tried to keep a variety of kinds of volunteering available, with different durations and effort, to ensure we got the help we needed, but also to help our friends feel like they weren’t being asked to do something they did not want to do, or were not capable of doing.

Here are some tips for writing those e-mails to keep everyone up to date:
– DO use specific language (although not necessarily jargon). When CrabbyCancerMan was diagnosed, I made the mistake of not being specific enough in describing the kind of cancer he had, leading some people to misinterpret it as far less traumatic than it actually was. By using the specific words, I helped our friends and family research what we were dealing with without having to explain it to them over and over again, allowing for further misinterpretation.
– DO talk about how the patient and caregiver spend their days. You don’t need to dwell, but it helps others see the patient and caregiver as more than the illness they face.
– DO let people know if it is okay to share this information (they probably will anyway, but it is good to let them know your preference).
– DO let people know your comfort level in sharing advice and stories about other people who have had chronic illness. In our house, stories of miracle cures and homeopathic remedies were not welcome, while other patients I know welcomed information of that variety. Similarly, some people gain strength from hearing about how one’s uncle’s ex-girlfriend’s brother survived a similar kind of illness, but in our house, those stories provided more stress than comfort.
– DO keep in mind that once the e-mail is written, you do not have control over who else will read it.
– DO use BCC so that you are respecting the privacy of those you are e-mailing.
– DO NOT write anything you do not feel comfortable saying. This is not a forum for you to share feelings you are not ready to share, nor make statements you are not ready to make.

If you are the caregiver, be mindful that the e-mails are not really about you – you are the conduit for the information, but really, people want to know how the ill person is doing, and they want to know that you are handling it or if you need help, and what help you might need.

We wrote e-mails about once a week, and sent more private e-mails to immediate family members with every major update.

In the months following my husband’s passing, I also used the e-mail lists to let people know about memorials and other events in which they might have interest. It was very helpful to already have all of those e-mails together!

Readers, do you have any other tips to share?

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