To some, the transition from eating by mouth to eating via a feeding tube feels like giving in to ALS.
Even though it may be extremely difficult to take medicine and swallow baby food, even though meals may be punctuated by coughing attacks and scary choking, even though it takes forever to eat the smallest amounts and weight loss is a serious problem — even so, there’s often a strong resistance to giving up eating by mouth.
As with so many adjustments in ALS, getting a feeding tube presents a big psychological hurdle that — once crossed — proves to be both liberating and empowering.
David Doner, 57, of Ann Arbor, Mich., received a diagnosis of bulbar-onset ALS in October 2005 and finally got a feeding tube in May 2006, after a couple of months of surgical scheduling delays. Over those eight months, Doner, who was president of RKA Petroleum (a CITGO affiliate), subsisted on soft foods, casseroles and ice cream, losing 38 pounds and a lot of vitality.
|The bolus method is one way to deliver food through a feeding tube.
That’s because weight loss equals muscle loss, says Kate Bednarz, nutrition coordinator for the Eleanor and Lou Gehrig MDA/ALS Research Center in New York. “The biggest thing we’re battling is weight loss. If you don’t get enough energy through food, the body will burn muscle to feed itself.” Waiting too long to get a tube and losing a lot of weight can make both surgery and recovery more difficult.
Bednarz says people often resist getting a tube because they equate it with end-of-life measures, although in fact the opposite is true. “This is a step toward the positive,” she says. Early studies suggest a correlation between feeding tube use and longer survival and better quality of life.
Another common misperception is that once a tube is in place, eating by mouth stops. “You’re still going to eat,” says Bednarz. “You’re just going to supplement what goes in.” The amount of supplementing varies according to individual symptoms, with some eating mainly by mouth and others mainly by tube.
On the advice of his doctors, Chuck Hummer, 69, of Pinellas Park, Fla., got a tube in December 2005, before having significant muscle loss in his mouth and throat. The surgery was quick and “not particularly troublesome,” says Hummer, a former senior executive with the U.S. Army Corps of Engineers who has slowly progressing limb-onset ALS diagnosed in October 2004. At present he still eats very slowly by mouth and merely flushes the tube with water. But he foresees using the tube more and more for nutrition in the months ahead.
Hummer is philosophical about using the tube. “I found having to go to a walker more psychologically devastating to me than the tube. By the time the tube came along I had sort of decided I was going to get ahead of the game as much as I could.”
Doner, who got a little behind the game due to his weight loss, found that once the tube was inserted, it took several weeks to expand his shrunken stomach enough to accept an adequate amount of nutrition.
“My life is much better now that I’ve gained some weight back,” he says, noting that he still eats by mouth occasionally to get extra calories. “I feel stronger and more active. With bulbar ALS, I would suggest getting the feeding tube right away.”
The learning curve
New feeding tubes go through a messy period, while caregivers and the person with ALS figure out how to keep everything moving in the right direction.
“Do it over the sink!” advises Hummer.
Home health nurses, paid for by most medical insurance, visit regularly to help in the learning curve. “We had our share of accidents, with food coming back out of the feeding tube, but with time that went away, and we got a system in place to do the meds and feeding,” says Doner.
With time and experience, caregivers also find homegrown solutions for common complications, such as leaking and irritation at the stoma, or tube entrance (paint the area with an antacid); or nausea after feeding (offer less formula more slowly); or getting medication through the tube without clogging (crush pills finely and soak at least five minutes).
It also can take trial and error to figure out what to put in the tube. Which kind of commercial formula? There are more than 100 types. Fiber or no fiber? Or should you eat homemade formula?
If a particular formula causes urgent bowel movements, constipation or an allergic reaction, a nutritionist can advise about alternatives. The MDA clinic is a good source of referrals.
Homemade formulas can be time-consuming for caregivers, but some people prefer to know they’re eating “real food.” An industrial blender is essential to successful home formulas, as standard commercial blenders simply can’t blend mixtures fine enough to go through the tube. An industrial blender such as the Vita-Mix 5000 (see “Equipment Corner,”) has a 2+ peak horsepower engine that can whirl food at 240 miles per hour, so fast it may boil. This makes it possible to blend up whatever the family is having for dinner without having to thin the mixture with so much liquid that it dilutes nutritional value.
With homemade formulas, work with a nutritionist to ensure a balanced diet, proper food volume, adequate water intake, and food safety procedures.
It’s still called a meal
Perhaps the hardest part of getting a tube is the fear that social eating is now over.
Leslie Silver, of West Caldwell, N.J., who cares for her mother with ALS, was amazed and dismayed to realize “in our small family, we never have a get-together without food of some sort. For Mom not to be able to eat has put a huge dent in our family activities.”
Although it feels awkward at first, families should look at tube feeding as just another way to eat, says Marsha Dunn Klein, OTR/L, an occupational therapist, tube feeding specialist and co-author of Feeding and Nutrition for the Child with Special Needs (Therapy Skill Builders, 1998).
Klein, who has worked with many families adjusting to tube feedings, finds that acceptance happens faster when families treat the feedings as “meals” not as a “dose” or medical procedure. “If the family usually socializes around mealtimes, then that has to remain. Otherwise, you’re not only taking away eating but this social time, and then you have a lot more to grieve.”
At mealtimes, the person with a tube may nibble on a bit of food or use the “taste-and-spit” method to savor a special treat. They may get a blenderized version of what everybody else is having, or they may receive their regular canned formula, then or later. Either way, they don’t have to focus on struggling to eat or on receiving adequate calories, thanks to the tube.
The actual process of putting formula through the tube can feel medical and technical, but it’s still a meal prepared by loving hands — and so still can be a pleasure.
Silver, whose mother is adjusting to tube use, says, “When we first started (doing the tube feedings) it was kind of scary to us, but now when we do it, it’s just my mother and me and it’s kind of a personal time. Sometimes we’re completely silent, but it’s a close, intimate kind of thing and I feel good about it.”