To Eat or Not to Eat, That is the Question

by Vicki Tapia, author of Somebody Stole My Iron

This post is part of the #Blog4Care blog carnival being hosted by Caring Across Generations. We’re hoping that by sharing our caregiving stories, we can begin to come up with solutions to the care crisis that is affecting millions of Americans.

My mother was diagnosed with Alzheimer’s disease in 2004 and eventually moved into a care facility. As the disease progressed, eating became an issue for her. She’d phone me to say things like, “You have no idea how horrible the food is here. These girls don’t know how to cook. I could show them a thing or two about how to fix food with some flavor.”

Whenever I joined her for a meal at the facility, however, I thought the food tasted fine. Astonished, she’d watch me enjoy the meal and in an incredulous voice, comment, “Well, there must be something wrong with me.”

“Oh, Mom, you have Alzheimer’s disease,” I would think to myself, but instead would tell her I thought the food was okay, and that maybe her taste buds were just “off.”

As time went on, she became less interested in eating and began to play with the food, squishing it between her fingers, smearing it on the table, and either tipping over cups filled with soup or tea, or pouring the liquid over the other food on her plate. Her tablemates began to complain, and no one wanted to sit anywhere near her as they were often on the receiving end of flying bits of food. The caregivers began serving her miniature portions, but that solved nothing other than creating a smaller mess.

In the midst of all this, it became apparent that she had basically stopped eating. She swallowed just enough to survive, never more than a few bites. When or what she ate was always unpredictable. Sometimes, a couple of days might pass without her ingesting more than a tablespoon of food, along with scant amounts of liquid. The caregivers at the facility did their best to entice her to eat, coaxing her to open her mouth and swallow, much as we do when feeding infants learning to eat solids. They tempted her taste buds with soft foods like pudding, ice cream, mashed potatoes and eggs. They offered liquid nutritional supplements, in her favorite cup with a straw. These attempts to urge her to eat were met with limited success. She often simply pursed her lips together and shook her head “no.”

One afternoon when Mom’s hospice care nurse arrived for her weekly visit, I asked if she knew why the facility caregivers expended so much effort in pressuring Mom to eat. The nurse replied, “Why, to keep her alive longer, of course!” As I pondered her answer, I realized it only confirmed my suspicions. Even to the casual observer, it was easy to see that the quality of my mother’s life was meager, at best. Although apparently unable to convey it to the caregivers, even with her pursed lips, it was evident to me what Mom wanted. She had made it explicitly clear to me when she said, “I’m ready to go anytime,” on numerous occasions over the past several years. Sadly, it appeared to me that force-feeding her was increasing her agony and prolonging the inevitable.

Alzheimer’s disease is a terminal illness from which people do not recover or “get better.” Watch your loved one’s cues. If he/she does not want to eat, is force-feeding the answer? Is it possible that we, as caregivers, override our loved one’s wishes simply because of our inability to face letting go? Certainly, if your loved one shows an interest in eating, offer him/her nourishment; however, consider the motivation behind insisting he/she eat, if your loved one expresses an obvious disinterest in food. Being cognizant of, and respecting, your loved one’s wishes and keeping those wishes at the forefront may not always be an easy path to follow, especially if it is at odds with the routine of the facility caregivers. This is a call for awareness: if you aren’t your loved one’s advocate, who will be?

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