Someone a bit further down the road I am traveling wrote a searing first person account of the day before being placed on a feeding tube.
It was scary to read, but at the same time unavoidable.
I came close again this spring to having to sit in that office and talk about a feeding tube, when at the last minute, after fighting for 2 years, NH Medicaid finally gave in and covered the 3 cans a day of ensure I need for 24 days. So far it is working, and my weight is slowly going up. However, no word yet if they will continue to cover it or not.
Someday though, I will lose the battle with gastroperesis, an unwelcome gift from the lesion damage of multiple sclerosis. Already it takes my stomach over 4 hours that a normal person is rid of in under 60 minutes. A dairy free vegetarian, almost everything I eat is inheretly low fat. On the days I plan to do nothing more than lay in bed and write, I must eat over 1700 calories. If I want to be active, washing dishes, writing, gardening, or any of 100 other tasks, I sometimes discover that I must consume as many as 2500 calories between 6am and midnight.
It gets exhausting to eat, and on the budget allowed on a low fixed income, the ability to have variety is near non existant. Some days I swear I can’t do it any more, can’t pay this thing away. Some days I swear I can’t do it, then a commercial ad “looking for this?” bruskly moves me out of the area I was in, and convinces me that yes, I can eat food pantry oatmeal for breakfast every morning, twice. Down an ensure while dressing. Eat food pantry rice or pasta with home grown veggies at lunch, and another ensure at 3. For dinner? More rice, pasta, beans…broken up exactly 12 times a month by a single Morningstar item that makes me feel like I am eating real chicken or steak in a parody of whatever cooked from scratch Betty Crocker miracle I have made for my guys. When we can, I have whatever cake, brownies, pies, or candy we can scrape together money to buy. Down an ensure with bedtime meds.
Actually, even thinking about what I will be eat in 3 hours is exhausting. That’s one reason I have home care aides. They know to just cook something, anything, as appetizing as their skill level allows, and take away the burden of trying to stare into a half bare pantry, mentally subtract the things I must save for the guys, and choose. Sometimes, picking what’s for dinner is a supreme act of mercy.
This writer has hit the wall. The only way to pump enough food into her mouth to keep her weight on even a somewhat sustainable level is to surgically insert a tube to constantly push in bags of unflavored Ensure. So she will never tase cinamon again, or the crisp of a potato chip. Just a sense of fullness as one bag empties, to be replaced by another. She speaks of the pain, the questions, the wishes for more time, even as she knows they don’t matter.
It is like looking at my future in a gypsy’s tea leaves….that God, science, and I may delay….but which will, like the grey hairs on my head, come unbidden and most likely without warning. One would think it would cause me to slowly savor each bite, roll it around my mouth tasting and feeling the texture. Sometimes, I still can, but all to often eating is a mechanical thing I do, a life sustaining procedure no more enjoyable than the 8 times a day I take medicine, or the monthly trip to the Doctor.
I decide to try, after reading her poem, to go find dessert that I can actually enjoy, can take an extra minute to let sit on my toungue. “Yes” I say to myself “There has to be a bit of caramel, or chocolate left I can drizzle over the pantry cheerios. That would taste.”
I glance at the clock, and it glares back that it is 9:56pm, and I am 400 calories short for the day.
No time to hunt for caramel, I double up on the ensure by adding 200 calories of soy powder to it, and choke it down fast so I don’t taste the chalky bite. Exhausted, I head for bed, wondering if tomorrow will be my turn to be like her…broken.