Susan,

I underwent 30 radiation treatments after surgery for a tumor found on the left/base side of my tongue. I completely understand the swallowing and taste issues your father is dealing with. I too got to the place where I couldnt' take ANYTHING else by mouth and although I was afraid I wouldn't be able to swallow again, I just couldn't do it anymore. I am currently 2 1/2 months from my last dose of radiation and just now able to do some light swallowing of liquids, pudding, applesauce, etc. I had a swallowing test completed last week and they said things look good but I'm still really swollen in my tongue and throat which could account for the difficulties I'm having.

My best advice, which is hard to hear, is he has to do this for himself. As frustrating as it is for you, you're right...the only control he has is over how he chooses to respond. I'm 31 years old. As much as I wanted to swallow, I couldn't do it. Everyone deals with this in their own way and everyone responds differently to the treatment. No one ever expected me to have the side effects that I did due to my age, but anything that could go wrong did and my recovery has been much more slow than I'd hoped.

Hang in there! Sounds like you're doing an amazing job!

Susan, you are doing a wonderful job in being your fathers caregiver. Dont get discouraged. Its a very hard job, I dont think I could do it. Alot of caregivers who have stubborn patients, have printed out various posts and left them where the patient could 'accidently' find them. It ususally has a great affect by letting the patient know they first arent alone and second how important it is that he does what you are telling him.

Im glad to hear that its not just you telling your father he must rinse and swallow. He is probably at the point where he really is hurting badly and the fatigue is getting the best of him. Its almost finished and then about 2 or 3 weeks he will begin to slowly feel a little better. Let him know that evrything will taste bad right now but he still should at least give it a try.

I hope he has anti-nasuea meds and can keep down most of the formulas. If the feedings are done too fast, that will cause nasuea too. I was surprised to read that your dad isnt using prescription formula. They have so many different kinds, some specifically formulated for easy digestion. I also use the Carnation VHC, its very thick and alone, full strength it bothers my stomach. Im glad to hear you dilute it. I aDD 1 CAN OF vhc with 1 can of the prescription formula, 2 cans of water and a scoop of hi protein powder. Im using a feeding pump that runs overnight. If your dad doesnt have a pump, ask for one. That might solve the nasuea problem by slowing down the feeding and adding more water. Also if he isnt sitting up during feedings or staying still while sitting for 20 minutes after feedings it can make him ill. Hope some of the pointers have helped.

Thats funny about thinking of putting cream on the tip of the tube LOL. Im not the brightest myself, I keep calling you Maxine even though you keep signing Susan. Silly me Sorry!

I also dont feel bad, thats how Im able to help others. Ive been thru it 3 times in 3 years, the last one was almost a year ago. The bad times hopefully are behind me.

Hope you and your dad have a good day. Dont forget to make some time everyday for you to catch your breath.