For the last few years, since I’ve been tracking such things, my mother’s eating habits have been atrocious. She never had a very big appetite but it had shrunk even further and sugar and fat had become her main food groups. She’d go into the kitchen in the morning and have half of a small glass of juice, half of a cup of coffee and half a muffin or pastry of some sort. This would take her about 2 hours to consume. At about 4:30 she’d have a little soup or guacamole and chips or a quarter of a deli sandwich and that would be it for the day, except for occasionally snacking on candy or Cheetos. So weird, as she had never had a sweet tooth or eaten much junk food, as far as I knew. For a while her night aide would bring prepared foods and could get her to eat a little while lying in bed with a towel draped over her chest.

That all stopped last October. She complained that food got stuck in her teeth, that it repeated on her and got stuck in her throat, that it had no flavor or was too salty or too sour. I started getting calls from the aides that she was refusing everything and when I visited she was no longer willing to eat foods I prepared that she usually liked, or have a meal with me in her dining room. She was also refusing to take her meds because she was scared of choking, and with her colitis, dementia, anxiety and depression untreated, things started to spiral downward quickly. As she became weaker her confusion and agitation increased and it became clear we had to get to the bottom of what was going on or she would perish.

The aide took her to see the GI and he sent her directly to the hospital, as she was dehydrated and malnourished. I hopped on a plane to NY and sat with her for several days while she was tested and probed. Together with the aides, also in attendance, I tried to keep her calm and to make nice to the nursing staff, who were being mightily abused. Eventually, it was determined that the muscles in her esophagus were not operating properly and the food was not being pushed down to her stomach. They performed a procedure to stretch the esophageal muscles in hopes that it would help, but the doctor told us that there aren’t any really effective treatments for the condition and she would probably need a feeding tube inserted in her stomach in order to get enough nutrients. This was met with an absolute refusal, so the doctor agreed to a compromise. She could go home and try to eat enough calories to maintain her health. I flew home, she returned to her apartment freshly fed and hydrated and we waited for what was next.

Two weeks later I was back on a plane because she had refused to eat and we were back at square one. The doctor said she had to go back to the hospital and she refused, at which point he made it clear that if she chose to stay home she was choosing to die. Initially she said that she wanted to die, but I don’t think that was really the case. We finally convinced her to go by getting a room on the hospital’s Concierge floor. This is the Four Seasons of hospital experiences, not covered by Medicare, where the well heeled are cared for in wood paneled rooms with flat screen TVs, concierge service, special catering, extra nursing staff and a snack bar for visiting guests. (Side note: I am profoundly grateful that we are able to do this for her.) She hated it all, of course, and was as nasty as ever to the nursing staff, who seemed accustomed to the whims of the wealthy. She was sick and scared and every 4 hours someone was trying to get blood out of her collapsed veins. She became increasingly irrational, screaming at everyone, accusing doctors of lying and calling them impostors, refusing care. It took 4 days and everything I had to convince her that she must get the feeding tube. The doctor said that it would be no big deal, it would be hidden by her clothing, would be painless and she would be getting all of the nutrients and medications she needs without the pressure of having to eat or swallow pills. If she starts to eat again, it is entirely reversible. Sounds great, right? Well, the procedure went fine, but the aftermath was horrible. When they gave her the feedings in the hospital she vomited. It was clearly too much for her tiny capacity. By the time they released her a week later, rather than 4 easy feedings through the tube with a syringe, she was on a continuous feeding drip from a bag on an IV pole. In addition, she was expected to be at a 45 degree angle at all times to avoid aspiration. This was not the way it was supposed to go. She was now, either throwing up, burping or feeling nauseous because she refused to allow the aides to keep her propped with enough pillows. I had to beg them not to quit because the abuse was so intense. I did not think it was possible to reduce her quality of life further but apparently we have succeeded. Should I have allowed her to starve herself to death? I don’t know, but here we are and now we have to deal with it.