My wife, Darcey, didn't want a feeding tube. She felt that if her life reached the point wherein she needed a feeding tube to stay alive, then her quality of life would likely be such that she'd rather be dead. Let me tell you right now, how wrong that viewpoint turned out to be for her. Our story follows...
Darcey's first undeniable "something is wrong" symptoms began in Nov 2012. She would not be correctly diagnosed (on our 2nd visit to Johns Hopkins) as having ALS until Apr 2014. In Sep 2014, her local neurologist suggested that she consider a PEG be inserted soon if she was going to have it done at all (due to lowering FVC numbers).
Darcey did not want a PEG. In fact, she was pretty adamant about not getting one. I told her that I'd respect whatever her wishes might ultimately be on the subject... but asked that she hear me out... for as her caregiver, I had some future concerns, too. My concern was that the day might come when she could no longer swallow and yet still needed medicines to be administered. If I didn't have the means to give her those medicines, I wouldn't be giving her the very best support that I could. I further said, even if at such a time she wanted to consider it time to call it as "End-Of-Life", medication to make her passing peaceful might not be able to easily be administered.
And so we both offered our own particular points of view to each other. By taking the time and making the effort to do so, we both were able to fully understand... and respect... the other's concerns and determinations. Accordingly, we were able to find an acceptable compromise. Darcey would get the PEG so that I could give her any medications that she might need and that she might want to take... when she could no longer do so by mouth. I was given the mechanism to provide medication but she retained the right to accept or deny any particular medication. I would not use it for any other purpose (food or drink), other than to perform routine water flushes (for proper tube maintenance), unless she specifically asked for it.
She had her PEG placed at the end of Oct 2014. A few months later, in Mar of 2015, Darcey's neurologist would inform her that he believed that "based on your history of declining FVC percentages, I believe that you are now within 6 months of your life's end." Darcey would smile at the doc and say, "I appreciate that... but I've still got things that I need to do... and 6 months isn't a long enough amount of time."
The PEG was a pain in the butt. Daily, we'd change out her 2x2 gauze pad and flush the tube. At every sling positioning, prior to actually lifting her with the hoyer lift, we'd have to make sure that the tube was out of the way and wouldn't get pulled. Darcey often commented on how she wished that she'd never given in to the idea of having it put in. That is... until she began to have difficulties with swallowing.
As it became more and more difficult to swallow liquids without aspirating, she'd instead take liquids via the PEG. As her quality of life was still good, she was now grateful for the option of using the PEG. Not much longer and she was unable to swallow anything at all... so food nourishment, liquids and medicines were all given via her PEG.
Darcey was unable to move the majority of her body parts. But she was still able to control her computer by voice command. This allowed her to write emails, engage with friends and social causes via Facebook and to open and watch movies and shows that were on Netflix and Amazon Prime. Her body may not have been able to move but her mind was sharp and her world was kept wide open. She was so very grateful for having the PEG and being able to continue living her life, day after day after day.
Darcey passed away last week... 6 years after having her PEG inserted... and 5-1/2 years after being told she likely only had 6 months left to live. What having the PEG inserted did for her was to give her a future choice. It did not hurry her towards deaths' door... but it did allow her to continue to live longer than she could have without it. My goal was always to make each of her days good enough that she'd want to wake back up that next morning. We took it a day at a time... and did so for nearly 8 good years. The PEG gave her control over her ALS... that she might live and die on her terms... not those of ALS. It should be noted that Darcey did not sit around waiting to die. Instead, she squeezed everything she could out of every day granted her to live. Her PEG helped facilitate that.
I hope that our story gives you and your Dad another perspective from two who have lived this. It is not meant to write your own stories... but to give you the insight to make better decisions, today, for life that is yet to be lived... for months and, perhaps, years.
My very best to you both...
Jim