Boston Women’s Journal - August/September 2006

The Marathon I Never Trained For

In my life and work I’ve certainly had my share of difficult medical and emotional challenges to deal with, as have we all. But for the first time I am in the process of going through two marathon medical, emotional, and spiritual experiences in my family at the same time. By the time this goes to print they may both be entering the next stage, but for now I speak from the “Heartbreak Hill” part of the run.

My father died two weeks ago at 80 years of age after a very long illness. My 85 year old mother kept him home to the end against all of our advice, but staying true to her own heart (she was right). The stress of his end of life time and extreme mental and physical demands, literally made her very sick and strained the family’s emotional resources and patience to the limit. Two weeks before my father’s death, my 48 year old brother, a type one diabetic who has been resistant to treatment or disease management for 20 years, suffered a series of heart attacks and strokes and remains in a vegetative state at a New York hospital on life support systems. He has been there six weeks as of this writing, and has been resuscitated 18 times. He is married with two teenage boys.

What am I learning from this experience that can be helpful to readers and to my clients? My scenario becomes more common as medical science is able to prolong life well past the limits of our imagination. Whether this is right or wrong may be a subject for another article, but for now let’s just accept the fact of it. I am writing this with the hope that some of my observations can help others understand how to deal with an intense long term crisis and how to treat others in this type of situation. How do you deal with this kind of experience and stay sane, and how do you treat those around you going through something like this?

For the helpers: One thing everyone will need is patience for strange behaviors and unexplained emotional outbursts. I broke into tears over the furnace coming on yesterday, the proverbial straw that broke this camel’s composure. Long marathon family illnesses like Alzheimer’s, and heart disease, and really any chronic illness require caring for the care givers as much as the patient. Cook a meal and bring it over, visit, cry with someone. Give spiritual help.

Do whatever you can to give space to the person dealing with all the family calls, life managing decisions on a daily basis, and just plain holding their job. Help with errands. Get that suit from the cleaners.

Don’t stop calling after a few days or weeks, marathons require support from friends or family over the long haul. You are not a bother. Especially as the weeks go by the support becomes more vital. Listen, just listen, to the same story over and over. Distract, take someone to a dumb movie or to get a pedicure.

Take the kids to a baseball game, remember that they often get ignored in a crisis and need attention too. They have feelings about what is going on, and the more adults who tune in to their feelings the better able they will be to cope with the situation.

For the person dealing with the crisis: Take the help, don’t be proud, you would do the same for them. Let people take care of you, it helps them feel supportive and useful.

Let family and children, cousins and spouses take some of the heat. Ask them to visit the ill person so you can get a haircut, let them do the airport pickups. I never knew I had such great cousins until I needed them. They set up a “Brigade” to transport my mom on hospital visits.

Lean on the ones who can be leaned on. Cry, shout, and pray. Get therapy and a support group if you need it. Tell people at work what’s going on so that if you drop a ball or two they know why. The slack they give you today will serve them well sometime. One thing I know for sure in life is “what goes around, comes around.”

Remember that life won’t always be like this. I went to Vermont to stay with some Buddhist friends this past weekend and heard some moose mating calls. As an urbanite I thought at first they were fog horns. What an amazing experience that among my personal pain a bunch of moose were having a serious frat party! Life is all around us, regardless of our little world of pain and illness.

Special thanks to all in my life who have been there without reservation for me.