My days consist of milliliters – milliliters on feeding tube bags, milliliters on syringes, milliliters on catheter bags. My father, who is no longer able to drink liquids due to Parkinson’s is now on tube feeding for most of his nourishment. Grandpa loves to eat, as do most of us, but he is only able to eat one meal, a day, by mouth. He does so with the risk of aspirating, but at this point in time, he loves food too much to give up on it altogether, so the bulk of his nutrition is dispensed by formula at an hourly rate, right into his tummy.
After a year and half of struggling to consume enough food and water to meet his nutritional needs, the feeding tube has actually improved his quality of life. At the age of 94 and three quarters (his 95th birthday is in September), he still loves to write fictional stories for children. He would rather spend the limited energy he has on something fun, like writing, rather than be stuck at the dinner table for hours, trying to swallow food and water, which have become his arch-nemesis.
On the other hand, my life as his daughter, and full-time caregiver has become more complicated. You would think with all the time we wasted trying to get an adequate amount of food and water into him over the last year and a half, a feeding tube would be a welcome change. In someways, it is, especially when it comes to medicine, but as far as getting enough calories into him to prevent weight loss, it is nearly impossible.The truth is, even though Grandpa’s mind says “Go, go, go!” his body is increasingly saying “No, no, no!” There is only so much his aged body can absorb anymore, and Grandpa’s innards are just plum tuckered out! Well, almost. He is working off of reserves, and when he has used all of them up, that will be it!
For the most part, he has adapted gracefully to the changes in his life, but he and I are learning the hard way, man cannot live on bread alone.