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Newsletters: The Importance of Food in Our Lives: Finding Balance Even When We Cannot Eat
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The Importance of Food in Our Lives: Finding Balance Even When We Cannot Eat

Marion Winkler, PhD, RD, LDN, CNSC

Eating can be defined as the consumption of food and liquid to sustain life and to meet our body’s basic needs for growth, development, and function. Every cell in the body depends on a continuous supply of calories and nutrients, whether obtained through food, IV nutrients, or tube feedings. Eating and food, however, also have symbolic meanings associated with love, sensuality, comfort, stress reduction, security, reward, and power. All of us have turned to food at one time or another for comfort, to help us cope with stressful experiences, to control our emotions, and to satisfy desires. Food choices, while influenced by taste and nutritional value, are also typically influenced by past experiences, many of which are social in nature.

Food and eating behaviors often begin during childhood and are closely tied to family and culture. There is a strong relationship between memory and food; for example, the taste, smell, and texture of food can trigger memories of earlier food-related events and activities in our lives. For me, hot chicken soup on a cold and rainy day triggers memories of my own mother taking care of me as a child.

Throughout our lives we may associate certain foods or meals with a holiday, past event, or specific memory. These associations may even provide comfort during times of sadness or sorrow. There is no question that food plays a major role in life. This role does not lessen even if the ability to swallow, chew, digest, or absorb food is lost.

 

Grief Is Common

Eating is something people often take for granted until faced with a situation in which they are unable to eat. The loss of the ability to eat is similar to any loss we may experience in our lives. It is common to mourn this loss or to have an extended period of grief or sadness.

Being unable to participate socially in mealtimes may leave some people feeling disconnected and isolated from those whom they love. It is important to identify and recognize these very normal feelings. If you would like help dealing with these emotions, you may want to discuss them with your health care professionals so you can be directed to appropriate counseling and resources.

Researchers have found that feelings about food vary depending on a person’s illness, their ability to tolerate food, or the need to avoid or restrict certain foods. Those who need to relearn how to eat after surgery or a stroke may struggle or feel challenged; those who are not able to eat at all report dreaming of ethnic foods or exotic meals, or longing for the way they used to eat in the past. People who have to avoid certain foods may find it difficult to resist the temptation to eat these foods, and are bothered by the many food commercials on TV.

 

Knowing Why Helps

Medically imposed food restrictions may be difficult to accept or embrace, especially when you receive mixed messages regarding foods to include in your diet and foods to avoid. If you are told to avoid or restrict a specific food, your clinician should explain what the expected goal or outcome of this instruction is. For example, changing the texture or form of the food may make it easier for you to swallow or digest it, or prevent gastrointestinal (GI) obstruction or blockage. Dietary restrictions may be suggested to prevent or minimize unpleasant symptoms, such as bloating, reflux, diarrhea, dumping, constipation, or pain. Bowel rest may be important to decrease GI fluids, lessen GI irritation and inflammation, or promote healing.

Ask your doctor or health care practitioner to discuss the purpose and the intended outcome and goal of the “diet,” restriction, or food recommendation. Oftentimes, simply understanding the rationale and purpose of the recommendation makes it more tolerable.

 

Relearning, Redefining

Depending on your specific situation, surgery, or medical condition, you may need to relearn how to eat. You may also need to define what “normal eating” is for you now. As much as you may long to “eat the way you always used to,” the reality is that eating may become an entirely new experience. For some, the amount they eat must be much smaller. For others, small frequent snacks and sips throughout the day may become the new “norm.” Chewing for taste and pleasure then subtly spitting the food out may be required.

Relearning to eat for pleasure, taste, comfort, or health may be a difficult experience; for sure it will require patience and determination. Guidance may be available from dietitians, occupational therapists, speech therapists, psychologists, or behavioral and mind-body programs. Assume personal responsibility for seeking, finding, and trying foods that you can tolerate. Use trial and error to determine what you can and cannot eat. A food diary may be very useful to help you monitor food tolerance. Consider the ability to taste and swallow one bite of food a major victory.

 

Strategies

Home enteral and parenteral nutrition (HPEN) consumers have described many strategies for coping with new limits on what and how much they can eat. Some strategies for restaurant eating include: eating a little bit from the plate of your spouse or friend; selecting an appetizer instead of an entrée; ordering a child’s portion; asking for a “to-go” box or “doggie” bag; or planning in advance to eat half of the meal and bring the remainder home for the next day.

An HPN consumer once told me that she just deals with the consequences of eating. She explained, “I still go to a restaurant, sit down and eat, and then excuse myself, go to the bathroom and upchuck.”

It is also entirely acceptable to sit at the table and not eat at all. Simply tell the waiter that you are planning to enjoy the company at the table rather than food, and that you do not plan to order anything to eat or drink. You could also give the waiter an Oley “restaurant card,” which explains you have a digestive disorder that limits your ability to eat and requests that they allow you to order a smaller or child’s portion, or share a plate. (Call 800-776-OLEY to request a free card.)

Holding a glass or plate, even if you can’t drink,  can help you feel more comfortable at a social gathering.

If you are unable to eat, family members, relatives, or friends may feel uncomfortable at mealtimes. Tell your family and friends you are happy to have their support, their conversation, and company. It is important to enjoy the social aspect of being with others even if you are unable to eat. Remember that a meal is not only about food. Meals are also about the human relationships and interactions that go on around food.

To simply enjoy the conversation and socialization is an important reason to attend a party or a food-related event. Wander around the room, mingle, chat, even hold a glass or beverage or a small plate, whether or not you plan to drink or eat. Better yet, ask the hostess if you can help serve the food. A long-term HPN consumer once told me, “It’s part of the ambiance of being together, the social part of it, not just the food per se but the whole social part of it.”

Cooking can also be a strategy to tie food and socialization together, even when you cannot eat. Learning to cook may bring joy to some people who no longer obtain pleasure from eating food. Some of the enjoyment comes from the smell of food, which may help to satisfy you during the cooking experience. Planting a garden and growing food also keeps some people connected to food. I’ll never forget the day a patient brought me a big brown bag of vegetables from her garden and told me she hoped I’d enjoy what she had grown, since she was unable to eat them herself.

Another long-term HPN consumer summed it up well when she told me, “I enjoy making people happy with food. I feel like this is my expression of love to make these really special things for people, and seeing...them enjoy it. If I participate, I participate, and if I don’t, I don’t.”

 

Children and Food

    Matisse finds great joy in cooking.

Whether they are able to eat or not, children should also interact with food! Foods may provide oral stimulation and non-nutritive sucking, and promote chewing skills. Expose your child to different textures, tastes, and colors. Develop food-related games to increase his or her familiarity with foods and mealtimes.

Handling food and playing with food and utensils encourages oral-motor skill development. Setting the table for the rest of the family is an important and necessary social skill. Children may also set the table for their dolls or stuffed animals and play-feed them, too. Older children can participate in shopping, food preparation, and cooking. Mealtimes should be maintained for socialization and to allow children to watch others eat. Most importantly, create a supportive eating environment for the entire family.

 

Quality of Life

The ability to eat and the enjoyment of eating are important aspects of good quality of life. In other words, “being able to eat what I want, when I want” makes us feel good. Factors interfering with eating or the enjoyment of eating typically include physical complaints, such as pain or severe or uncontrolled diarrhea; physician orders not to eat (having to stay NPO); restricted diets; a perception of wasting money when food is not digested or absorbed; and general ill feelings associated with poor health. If you’ve made dietary changes and continue to experience these symptoms or complaints, ask your clinician to help you resolve them. If dietary changes do not improve GI symptoms, balance the benefits and risks of continuing the food restriction.

Relearn to eat for pleasure or comfort when HPN or tube feeding is providing the majority of your nutritional needs. A small bite, taste, or the chew-and-subtly-spit technique may be important for your quality of life. Being able to join a spouse, family, or friends “normally” during a meal is strongly tied to improved quality of life. Try to achieve pleasure from tasting small amounts of food, enjoy dining in restaurants, or obtain satisfaction from participating in social occasions. Community and a sense of belonging and taking part in social gatherings are important, whether you are eating food or not.

LifelineLetter, May/June 2011

more Calendar

2/6/2017 » 2/10/2017
Feeding Tube Awareness Week

2/18/2017 » 2/21/2017
Oley exhibit at A.S.P.E.N.'s Clinical Nutrition Week

5/6/2017
Oley Regional Conference

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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