A Serious Illness Can Isolate a Family

Gestures of Support Help Greatly

I know they mean well. Really, I do. So why is it that when people ask how my husband is doing and I say we're living day-to-day at this point, they reply in a placating tone, "Well, none of us knows what's going to happen. Any one of us could walk out the door in the morning and get hit by a bus."

The thing is, we do know what's going to happen; we just don't know when.

My husband suffers from a life-threatening disease called vascular Ehlers-Danlos, which causes spontaneous rupture of arteries and hollow organs such as the bowel. He's been through a lot: His aorta has split and been grafted, he's had two bypasses of the major artery that feeds his legs, his bowel has been cut in two and sewn together again, and he's had to have an aneurysm repaired, all because the blood vessels in his body are so very fragile.

When each of these emergencies has occurred, world-renowned surgeons at the Cleveland Clinic, Johns Hopkins Hospital and the Washington Hospital Center have operated on him -- and so far the results have been successful.

According to those surgeons, though, one day he will probably suffer a fatal rupture.

'Terminal Etiquette'

What I've come to realize as I've watched my husband struggle for his life over the past four years is that there are certain things people can say and do to make that wait more bearable, and there are words and actions that miss the mark, triggering even more distress.

It boils down to what I have come to call "terminal etiquette."

Terminal etiquette, of course, isn't limited to vascular Ehlers-Danlos. Its tenets can be applied to any number of terminal illnesses and the patients and families experiencing them.

For us, one of the most difficult hurdles in adjusting to my husband's long-term illness has been dealing with the incredible sense of isolation the situation has created for our family.

According to certified child-life specialist Jeanne Higgins Bergin, we are not alone. (Child-life specialists work in hospitals and other settings to support children and families facing medical crises.)

"People in these situations experience an amazing feeling of isolation just because of what they're dealing with on a daily basis," says Bergin, who practices in Connecticut. "On top of that, people often avoid the issue or the family, out of a fear of not knowing what to say, and that just compounds an already isolating experience."

Instead of avoidance, Bergin advises that people should acknowledge the situation, be empathetic, reach out and offer specific ways to help the family.

In our case, people have offered, for example, to cook, clean, do laundry, run errands, include our children in their family's activities, plant flowers, rake leaves and shovel our snow. By far, the greatest comfort to us, in the throes of all the uncertainty and unknowns of the past four years, has been knowing that our children are happy; to have friends and relatives reach out to include them in their activities has been a huge part of that.

Bergin points out the importance of being proactive in offering help.

"Don't just ask what you can do," she says. "Come up with a plan and do it. That way, you're not adding pressure for the family to come up with ideas and get back to you. Just make sure you run your idea by the family first. Each family's idea of what is helpful varies significantly."

She suggests offering something as simple as dropping off milk, bread and bananas every Monday and Friday, for example.

"By doing this you're creating a sense of routine and continuity in a family's life that has been turned upside down," Bergin says. "It's amazing how much families in turmoil crave something that they can rely on week after week, even if it's only something as simple as a loaf of bread being delivered.

Lori Wiener, coordinator of the psychosocial support program at the National Cancer Institute, concurs, and suggests offering help well after a diagnosis, treatment or surgery. "Those points in the journey are the medical crises. What most people who haven't gone through anything life-altering don't realize is that the emotional crisis for a patient and family has a much longer trajectory and, oftentimes that's when we find families really need the help. That's when the impact of everything they have just been through, including coming to terms with their mortality, hits, and even day-to-day activities can become extremely burdensome."

What Keeps Us Going

For us, the stream of cards throughout the year, the surprise dinners on our doorstep, even when we haven't been in a critical surgical time, are what have kept us going. I liken them to cups of water throughout the marathon.

What hasn't kept us going, however, are comments like "It will work out in the end" or "Everything is going to be just fine" or "I guess we should all really live like we're dying."

Those words not only trivialize the experience of what the patient is going through but can also cause anger.

As my husband once asked, who would really want to live like they're dying? "The truly dying are too busy being in constant pain, taking tons of medications, vomiting, fighting infections, undergoing treatments, having surgeries and visiting doctors around the clock to be out seizing the day," he said.

Above all, Bergin and Wiener say, on any given day, whether it be during the critical juncture of a surgery or when the family is waiting for the next challenge to arise, be present for the patient and family. Listen and hold their hands.

In the end, that might just say it all.

Bonnett-Rampersaud is a freelance writer in Olney. For more information on vascular Ehlers-Danlos, go to http://www.ehlersdanlosnetwork.org. Comments: health@washpost.com.