For the first 58 years of my life I have thoroughly enjoyed eating. To the point that I’ve been obese most of my adult life. Let’s just say I have had very few people in my lifetime tell me I needed to eat. That is until my wonderful strolling companion, LBD, and I made it much farther down this dark path we so often traverse and turned around a brand new bend in the path to discover I am being precocious in my progression. You see, almost all dementia patients lose their appetites and eventually refuse to eat but this usually occurs very late in the disease process, ie., the shutting down of systems toward the end of life. I, on the other hand, apparently can’t wait that long.
Approximately 4 months ago I started losing my appetite and becoming nauseous after just a small portion of my meal, to the point of vomiting on several occasions. It’s not that I’ve lost my taste for food, on the contrary, food may possibly taste better than it ever has. I don’t have an aversion to food, I’m not telling myself with every bite that I shouldn’t be putting this stuff in my mouth. I actually enjoy the food for the few bites I get in before the nausea sets in. I have gotten to the point that if I consume 650-700 calories/day I’m having a really good day. To this point I have lost ~44 lbs and I’m waiting to see we’re th bottom lies.
I’ve had both an upper and lower scope, both were WNL, more blood tests than I knew had been invented, a barium swallow, and a physical from head to toe. Aside from a couple of elevated B vitamin levels, everything was normal. After my GI doc conferred with my bariatric doc, neurologist and my GP, the general consensus was reached that my issues were related to the advancing LBD. And as with most things dealing with LBD, the feeling is there is no “cure” for my new symptom. Their fear is that, as I’m a rather good sized fella, that I’ll lose down to around 160-170, deplenish my fat stores, and not have the physical reserves to fight off an infection such as pneumonia. They don’t want me to drop below 200 lbs. Sorry, I blew through that several days ago.
All we can do is treat it symptomatically by increasing my number of daily meals (I’m almost grazing at this point) and vastly decreasing the meals individual size, eating anything I can tolerate, at this point calories are the important thing. We prefer healthy proteins and grains, etc... but right now, everything is fair game. Problem is, nothing appeals to me. The other thing we’re doing, which I really did not want to do, is adding an appetite stimulant, Magestrol, a synthetic progesterone derivative. It is normally used for cancer patients, anorexia patients, AIDS patients who cannot eat... you get the idea. I have no idea if it’s going to be successful as I just started it yesterday. We shall see...
Now please understand, I’m not looking for sympathy here, I just want each of you who are walking this path for the first time either as a caregiver or patient, to understand the pitfalls that may come, some of the obstacles and blessings that come with them and some possible answers...
Have an awesome day!