Oct 18, 2008 - 9:37 pm
Hello everyone. I guess like everyone, I have one heck of a story and have been looking for a place for me to vent, help, talk, listen and learn. My father and I have always had a volatile relationship due to alcoholism and abuse. In February he was diagnosed with renal failure and dementia, so I took him in to take care of him. We (for the first time in our lives) developed a father-daughter relationship and enjoyed most every minute we have together. On a recent trip to Pennsylvania to visit family he became ill. Finally, someone yelled (me) loud enough and the doctors looked a bit harder. He was found to have a large cancerous mass in his esophagus which was pushing against his airway making it hard for him to breathe. The doctors put a trach in him and during the surgery took a biopsy. He was then diagnosed with stage four esophagus cancer. My siblings wanted me to put him into a nursing home in PA, but all my father wanted to do was come home and enjoy his dog! So, home I brought him. After the long trip (because we both live in NC), he was placed back into the hospital again.
After a PET scan it was found that he had cancer in his esophagus, thyroid, two lymph nodes and his right lung. They gave him "months" to live. So home we are, getting ready for radiation on Tuesday. The outlook is very grim and the only hope we have is that the mass will not rupture, his heart will not give out, his body can handle radiation...and he does not choke himself to death!
I am on day two of having him home. I am dealing quite will with the Peg tube feeding, giving him his meds via peg tube (sorry forgot to mention that he cannot eat or drink due to the trach and the fact that the mass in his esophagus does not allow anything past), suctioning, venting...etc., etc., etc...HOWEVER...I am finding it very difficult to keep this 64 year old man away from food and drink. I am about ready to toss every item I own into the trash! It does not matter how many times I tell him how dangerous food is to him. It does not matter how many times the nurse who comes to the house tells him how dangerous it is for him, he continues to eat! He is a little food thief who steals to eat in the bathroom! It is humorous and scary at the same time. All he can say about himself is can you blame me? Why is it that he wants so desperately to do the radiation to help prolong his short life, but takes chances eating? I know he is hungry. I know it takes time to get use to tube feeding. But to take the chance? Here is an idea of my night. We got home from the hospital. I went into his room to make up his hospital bed. While I was in there getting all of his stuff ready, he went to the kitchen and ate a tortilla scoop, which got stuck in his trach. I had to remove the outer piece to clear it. Scared the crap out of me!
I had to go through so much to allow him to be in my home for this ordeal. My siblings attempted to take legal action. They were more concerned about what we would do with him after his death, and I more concerned about the time he has left. I am so afraid that I will have to place him somewhere due to him wanting to eat. I am afraid I will loose him to something getting stuck where it should NOT be! I am just afraid, period. It is so funny that out of every thing I could be afraid of...out of all of his gadgets it is food that scares me!
Lord have mercy on the hungry!
I do understand that we must be sympathetic because it takes the body some time to get use to the formula and the stomach must shrink to the desired size...blah...blah (says the nurse). I also know that once he starts radiation, he will not want to eat...but that does not help.
Pardon the venting! It seems like this is the only place I can do so. It is just me and my dad and my dog. Yes, there is a 19 year old who can help (daughter), but she is afraid for him. Yet all of the family is North...so this is where I will vent.
I am getting winded, but it is feeling good to get out. I am a bit angry because I just finally got the Father I always wanted...after all of the hurt and anger...here he is! Only to loose him to this horrible disease. Sucks, loosing both parents to cancer! Funny, I just had a birthday and I feel as if I aged 10 years instead of 1.
So, how do caregivers go about making time for themselves? Oh, think I just did.
Thanks for the outlet!