You hope it won’t happen, but sometimes it does: an emergency. Here’s one couple’s experience and recommendations. Only their names have been changed, at their request.
It happened to the Pratts, a couple from New Jersey, a few months ago.
Joseph, 48, an art director at an advertising firm, learned he had ALS a year and a half ago, but his weakness had progressed quickly, and he was no longer working. His wife, Susan, a school librarian, felt comfortable leaving him home alone for certain periods of time, but it was clear more help would soon be needed.
Joseph, who had always been slim, was having a lot of trouble eating and had lost some 20 pounds since his diagnosis. And he was getting short of breath more often.
“The breathing became an issue,” Susan says. “We had seen Dr. Gordon [the MDA/ALS Center co-director at Columbia University in New York], and we were in the process of purchasing a BiPAP.”
Then one March afternoon, things suddenly became worse.
“That day he tried to take naps. He was very tired, but he couldn’t take a nap, even on his side, because of the shortness of breath,” Susan recalls. “Prior to that he had had these episodes, but he would recover his ability to breathe.”
This time he didn’t recover. “He was very uncomfortable, doing shallow, quick breathing, and we said, “This doesn’t seem right; maybe we should call 911.”
Off to the ER
The paramedics came quickly but couldn’t relieve Joseph’s distress and recommended going to a hospital 20 minutes away. While they got Joseph into an ambulance, Susan had only a few minutes to gather a few things, call her sister to take care of the Pratts’ 8-year-old son, Jimmy, and follow the ambulance to the ER.
There, Susan handed the ER doctor the phone number of neurologist Paul Gordon, but when the doctor called, Gordon wasn’t available. Fortunately, another neurologist covering for him got on the phone and suggested to the ER staff what tests should be ordered.
The couple were in the ER for six hours while various tests were conducted. Joseph’s carbon dioxide levels were found to be too high, and the doctors started him on a BiPAP.
When things worsened, they recommended hospitalization, intubated him (put a tube down his throat), and put him on a ventilator.
“They didn’t do the trach for about four days,” Susan says. “They said it could wait a few days, but if we didn’t [eventually] have a trach and vent, he would die.
“So the decision was made that weekend to go ahead with that, and also with a feeding tube.
“We had known about the use of these devices; Dr. Gordon had explained them. But we weren’t sure whether we wanted to go for them, and we had put those thoughts aside. We wound up having to get them anyway. It wasn’t planned.”
Fortunately, Joseph was able to make his wishes known in this emergency. “It was sort of in crisis mode, which was not a good thing,” Susan recalls. “But he told me, ‘I want to live,’ and he knew that if he didn’t have the trach done, eventually, he would die.”
Joseph is now in another facility, where doctors are trying without success to wean him from the ventilator. Susan is trying to figure out either how she can pay for around-the-clock care for her husband at home or whether he’ll go to a nursing home, which their insurance would cover for only a short time.
In retrospect, Susan says, things didn’t go as badly as they might have — but they could have gone better.
Here’s her advice to caregivers:
Make a list of the medications the person with ALS is taking. Put it on an index card and keep it with you. Susan had this and is very glad she did.
Have a bag packed with extra clothes for yourself. Susan ended up staying overnight without a change of clothes.
Pack some food. “I ran out of the house with no food,” Susan says. “They fed Joseph, but not me. Around 8 o’clock that night, one of the doctors got me a sandwich and yogurt from the doctors’ supply. You’re always in the ER a long time.”
Have the names of trusted friends or family members that you can call in a pinch. The Pratts were very grateful that Susan’s sister was available.
Have a cell phone ready and charged, and have important phone numbers with you. Pay phones are scarce these days.
Find out from your regular doctor what to do if he or she is unavailable. The doctor covering for Gordon turned out to be fine, but it helps to know more beforehand.
Look at your insurance policy and know what it covers.
Talk about tracheostomies, ventilation and feeding tubes before a crisis arises. (See “Five Wishes
“We didn’t do much talking about interventions,” Susan says. “They suggested that we think about a tracheostomy three months prior to the ER visit. But you don’t want to deal with it. You have ten thousand other things to do.
“It was very difficult, because his needs had been increasing over the last couple of months, so that I barely had time to scratch my nose. We never talked about it enough.”
"Five Wishes" is a legal document (in 37 states) that outlines your wishes or advance directives in case you become incapacitated. It offers more than standard living-will or health care power-of-attorney documents by also including your wishes on dignity, comfort and important personal matters as well.
The document, developed in conjunction with the American Bar Association Commission on the Legal Problems of the Elderly, is available for $5 from the nonprofit elder advocacy group Aging with Dignity.
To learn more or order, call 1-888-5-WISHES; or visit www.agingwithdignity.org; or write P.O. Box 1661, Tallahassee, FL 32302-1661. In the 13 states in which the document isn’t legal, it can still be used as an attachment to the state’s required forms.