The Caregivers Guilt Over Loss of Appetite

Loss of appetite is a symptom experienced by most terminally ill people. It is an expected symptom that will slowly get worse over the course of their last few weeks of life. It will be treated with varying results. Eating, however, is equated with comfort for the rest of us, not eating then, must mean something very bad. But what families are fighting is the very natural process of a body preparing to die. During the last few weeks of the terminally ill person’s life, lack of appetite will serve a purpose in the dying process, which is to direct the body’s energy to it’s most important functions, that of brain, heart, and lungs. Digestion requires a lot of energy on the body’s part, energy that in the final days is being carefully rationed. Perhaps if more people knew that declining appetite was expected, and why, they would feel less tortured by the idea that they were responsible for somehow starving their loved one to death. As hard as this may be to hear, do not force someone to take in more than they desire. Offer frequent small sips, or a bit of popsicle if it can be tolerated. Try tempting them with their favorite flavor of orange or cherry. Forcing more than that, even though you may feel you are helping, will only create more uncomfortable symptoms like nausea, vomiting or diarrhea. Even those with a feeding tube will face the day when that added fluid is too much for the body to process and absorb. As distressing as this may appear to you, remember this is a natural part of the dying process, the dying person feels less hungry. Because it feels unnatural to you, a healthy person, does not mean forcing food into a frail body will make them feel better or keep them alive longer. In fact, the dying body actually releases endorphins* at this time to prepare for this stage of the dying process. And yet on too many occasions even after explaining that a loved one was not starving to death, I would find well intentioned family members spooning food into an unresponsive person’s mouth. When a person is not able to swallow properly there is a great danger of food or fluid going into the person’s lungs causing aspiration pneumonia. This is just as deadly for your loved one.

I knew a very sweet woman who came to visit her husband at the hospice house daily. Most days her husband slept but she could rouse him to take a sip, or a bite or two of yogurt. One afternoon as the aide and I were freshening up her husband and repositioning we found that there were several pieces of meat pocketed inside his cheeks, which I then carefully swabbed out of his mouth. His wife had attempted to get him to eat some of the sandwich she had brought because she was concerned about his growing lack of appetite. I explained the dangers to her, and listened to her fears that her husband was starving, reassuring her that what she saw happening was the natural progression of the dying process.  Her husband was sleeping more and eating less because he was dying. She told me she understood, but that his lack of eating made her feel anxious, as if it were her fault or she was a bad wife. When evening came I went to their room to check in only to find her spooning yogurt into her husband’s mouth while he was lying down flat and sleeping. He could only open his eyes for a second when I called his name. The yogurt that was not pooled into his cheeks had dripped down into his lungs. He was unable to eat, he was unable to swallow. Whether it was the aspiration pneumonia he developed or the leukemia, he died two days later. What he did not die from was starvation.  What you can do when a person is no longer eating and or unresponsive, is to moisten a mouth swab and roll it over the tongue, teeth and gums. Roll balm, or chapstick onto dry lips. Easing the symptoms of a dry mouth provides comfort that you are looking  to give your loved one without harming them in the process.

Read more on loss of appetite among the dying here.

5 Comments Add yours

  1. Gail says:

    Thank you so much for writing this very helpful post. My mom had a very hard time with guilt when my dad quit eating. She voiced her concerns and this is where hospice was SO helpful. I have to admit, 12 years later, when my mother was lying in a hospice residence dying from cancer, I experienced those same feelings and knew EXACTLY how she felt when she went through it with my father. It is just so hard.

    I also remember my mother in the last weeks of her life would open her eyes and ask us for water or something to eat. One particular family member asked me WHY I was giving her water and food and told me I was only delaying her death. I politely told this person that my mother had asked for the water (or food) and I would not withhold the food or water she was ASKING for! If she told me she was not hungry and to please not make her eat, then I abided by her wishes. I think what bothered me a lot was her running a fever when she quit drinking altogether. Her hospice nurse told me this was normal. I felt she was burning up and worried that she was uncomfortable.

  2. meKathy says:

    Hi Gail, my condolences on the loss of your parents. As I’m sure your mother’s hospice nurse probably told you, it is not uncommon for dying patients to spike a fever. Sometimes Tylenol is given in suppository form, but it doesn’t always work. I think you handled your mother’s request for food or water just right, you went by what she herself wanted, and was able to take in. It did not prolong anything. It is extremely hard to sit with a person you love as they are dying,and although it may seem as if you couldn’t do anything, it is actually that gift of love by being there that is the best gift of all.

  3. Gail says:

    Thanks Kathy. I tried to reply to this last night several times but it kept saying Reply failed, try again? So I’ll try again today!

    As hard as those times were, I’m glad I was there for my mother. My mother was afraid of being alone when she died and so I’m grateful I was with her during her final days and when she was taking her last breath. Thank you again for what you do. Hospice nurses are very very special people.

  4. meKathy says:

    It truly is a life changing experience to go through that, wouldn’t you agree? Very much appreciate your kind comments.

  5. Gail says:

    Yes, I would agree. Life changing.

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