Q&A with Pat Coley
How did the diagnoses affect your life?
I can't eat, for one thing -- I have to put a tube into my stomach and feed myself through the tube. I would do anything for a hot dog. With the arthritis, it's getting more and more difficult for me to get around. I have a broken arm that never healed, and I have to wear a splint on that constantly. After I take a shower, it's difficult for me to get it back on and tighten it properly. That's how I got involved with a care team.
How hard is the process of using a feeding tube?
It's difficult for me to remember the problems I have with tube feeding as I've become so used to it now. But I constantly yearn for the taste of food. Television commercials are quite hard for me to take. It was really rough around the 4th of July, with all the advertisements for frankfurters, mustard, catsup, relish, etc. I love hot dogs. I have found one cookie that I can get down my throat. I soak it in water and then swallow it. The taste is marvelous.
Also, I have always liked going out to dinner. That's a definite no-no now. Also, going out for a drink with friends is another definite no-no.
I think I am lucky in that I do all of the feeding myself. I mean I don't lie down and have the food poured into bags on a stand. I use a large syringe, which I place into the tube, and I feed the food into it myself. That way I am not just stuck in one location until the whole thing is finished.
Do you find that the healthcare system is set up to deal with people in circumstances such as yours?
It's amazingly not set up for that. I've been very lucky, with the care team. I've run into some people that have given me help when I've needed it. A lot of people don't get that kind of help.
I hate being treated like a know-nothing, unworthy of conversation with a doctor. Communication is lacking between patients and professionals. I understand that this is not just limited to HMOs now, but my entire experience has been with HMOs for over thirty years. My main objection is what seems to be the assumption by the non-professional personnel (secretaries, clerks, etc.) that all senior citizens are either senile or suffering from Alzheimer's. I doubt if this is my own paranoia, as I have heard it from many others.