From the early onset of our mother’s illness until her death, she faced nutrition issues.  We see them more clearly now, in the illuminating light of hindsight.

When our father was still living, our parents together were still cooking and preparing their meals.  But when I visited I observed two important concerns:  Mother seemed to be losing weight rather rapidly, and frequently she would engage in another activity while my father ate alone. I have concluded that even though she would faithfully go to the kitchen and cook, she would delay eating, and sometimes did not eat at all.  She simply forgot to eat. And as her body was deprived, it seemed to become less demanding for food. 

After our father’s death when we engaged a caregiver to live with mother, we always emphasized the following nutritional and mealtime tips, generally applicable to all caregiving situations:

1.   Be sure the loved one is amply hydrated each day at mealtimes, and in between meals given juice, tea, or water supplements. 

2.   Prepare balanced meals, including the person’s favorite foods. 

3.   Serve meals on a scheduled basis, and in an attractive presentation.

4.   Sit at the table with the loved one as long as he/she is able to handle this arrangement. 

5.   Reduce distractions such as too much table clutter, noisy TV or radio, or loud talking.

6.   If needed, cut food into small bite sizes to avoid choking. 

7.   When the loved one hesitates to eat, help the process along by handing her/him a fork or spoon, or by offering the first bite. 

8.   Be alert to any physical symptoms which could suggest the need for a medical check-up, including: acid reflux, indigestion, fever, refusal to eat, bowel changes, vomiting, or excessive fatigue. 

As the disease progresses the challenge shifts in its nature and intensity.  I recall such a shift on one of my trips with Mother.  We stopped for a restroom break after which I seated Mother at a table and brought her an ice cream cone.  I left the table to get her a glass of water when I observed responses of shock on the faces of people in the restaurant.  I quickly turned to check on Mother – she was stuffing the napkin in her mouth while the ice cream lay on the table out of mind.  She had reached a level on which texture, color, and familiarity of a food product eluded her. 

In time, Mother could not come to the table.  We carried her tray first to her chair in her room, then to her bed.  My sister was especially gifted in and committed to making the presentation of every meal attractive and tasty.  This behavior always touched and taught me.  Mother would sometimes smile or make barely audible sounds of affirmation when she had her first taste of breakfast, oatmeal loaded with brown sugar and warm whole milk. When swallowing became virtually impossible, we pureed her food.  Even so, she might require hours to eat a small meal.  We would offer, only to be denied.  We reheated the food, and started over.   Repetitively we did this until we thought it was enough, for her and for us. 

Efforts with the nutrition challenge were huge, from the beginning.  The transitions required keen observations and nuanced change responses by all caregivers.  As long as she could show any appreciation she did so. When she could no longer swallow at all nor imbibe sustaining fluid, we honored her wishes and forced nothing further.