My Dad also had said he would never get a PEG tube and he loved his food as well. After getting to a point of choking on everything, even shakes, and losing a great deal of weight and experiencing the weakness that it caused, he did decide to get a PEG. It was a hard adjustment for him but he DID adjust. Especially because at first I would cook and blend food and put regular things into his belly. That made him happy! It also meant that he could have his nightly cocktails and that was his biggest selling point. We learned that if he coughed or belched after a feeding he could taste what we put into the peg so I continued to make sure his coffee was made the way he liked it and that all things tasted good. By the time we switched to formula only, he was used to the peg. He has had it for nearly 2 years now.
We had many times where Dad seemed to lose his will to live during this battle and it was hard because as his power of attorney, I had to separate his feelings from mine and support his wishes. He chose me for that role for a reason, he knew I would put his feelings first at all times. No, it's not easy for us to be the ones to make these decisions and it is heartbreaking sometimes. Before any choices are made on your PALS behalf, think long & hard and make sure that you remember what they have said or expressed in regards to how they want to live their lives and how they want their lives to end. If you stick with what they want, you will not feel guilty for making the decisions for them... at least that's my experience. It's hard but it's right.
We stopped my Dad's feedings this week. I have been struggling with the decision for a few weeks now but Dad's body decided for me that it was time. He has gotten to the point of being violently ill each time he is given ANY formula. His body is skin & bones now, literally, but he just can no longer digest the feedings and it reduces his quality of life to feed him now. I was afraid to decide for him when he should begin to let go and fortunately, he made the decision himself. If you look closely at your loved one, you'll see their cues, their desires, their wants and needs will show and it will guide you. It still isn't easy to be the one vocalizing it "stop the feedings now" and that then has to communicate the plan to family and friends... but knowing it is right goes a long way towards doing this with peace of mind and confidence.
If your PALS wants to let go and avoid getting to a point where my father is, I know it will be hard to accept because you love them but if you can, find a way to accept it and support their decision. While you may lose time with them, you won't neccessarily lose quality with them and if they are prevented from being completely helpless in a hospital bed, unable to communicate, move, laugh or be comfortable, it may be a blessing for all. We are helpless in the face of this illness but can control how we face it, to an extent...
Sandy