Maintaining feeding tubes(With some history)
I'm a co-caregiver with my wife. While it may sound unusual, we car for her ex. He's a vet who was disabled in Vietnam when a landmine blew up in his face, taking part of his right frontal lobe and his eyes.
She met him and felt sorry for him because his family didn't provide proper care for him, rather using his money for their own personal gain. My wife is a nurturer and wanted to be away from her father so she married him and promised to take care of him, which she did. I don't have a problem with it because my family has had its share of servicemen from WWII to my brothers in Nam. I've seen vets get swept to the side and will never be one to do the sweeping.
We met ten years ago and she divorced him on the condition that he be allowed to stay under her guardianship so she could maintain her commitment. The only alternative would be a nursing home because of his many issues. He's had epilepsy since '73, spent time in a coma in '78, has a heart condition and is developmentally disabled. He either doesn't or can't or won't acknowledge when he's ailing and sometimes we don't know for sure until he's very sick. We're fairly certain he's in the early stages of Alzheimer's but aren't sure. He has frequent problems with constipation and urinary incontinence.
I was between jobs when he developed diabetes after having all his teeth pulled for dentures. My stepdaughter came by to take him to her house and he was agitated and convulsing. I called paramedics and his blood sugar had spiked to over 600. From that day on, it became necessary for me to stop working to help care for him as there are times when he needs to be physically helped or cleaned and my can't do it because of her physical limitations. There have been times when he was ill I literally carried him around the house and cleaned feces off him 3-4 times a dat for months on end. She could not to do it.
He's been in the hospital at least 10 times over the past 3 years for dehydration(Because he refuses to drink at times), low blood sugar, high blood sugar, multiple urinary tract infections, overmedicating which led to decreased function, because his anticonvulsants, which secreted through his bowels would be retained and this year alone he's been in 4 times since 12/31 for pneumonia, an esophogeal ulcer which almost killed him and two UTIs. The last one took him two weeks to recover from. In 2006, he had a catheter in for 6 months before he could urinate on his own but he still has issues. He's been diagnosed with an enlarged prostate so that's part of the problem, but he also will sit and scratch himself when he has to go, but when you ask him if he has to go he says no.
His physical limitations led to us placing him in a nursing home for rehabilitation for the last month. He's doing better but he's had a feeding tube in place for over a month and although he's had a swallow study done that proved normal, he has difficulty swallowing when eating, as though there's some misfiring in his brain. He's had this issue since November. He used to be a true glutton, where food was a source of great enjoyment for him and now he can barely eat.
He'll probably be coming home within a couple, few weeks but we're assuming it will be with the feeding tube. While we've been told we'll be instructed on proper maintenance and use, we were wondering just how difficult it can be to maintain them from someone with experience.
We're hoping we'll be able to handle it when he comes home. He can be very difficult to diagnose when he gets sick because he's had so many things that manifest themselves similarly and doesn't communicate any discomfort. She promised to never have him put in a home and to be honest, I don't either. I've grown fond of him over the years and have been through a lot with him. When I visited him in the hospital while he was still ill and could scarcely communicate he looked so old and weak. He's only 61 but he looks as though he's 80. When I left that day it felt like I was leaving a brother laying there and it hit me pretty hard.
If we can't care for him once he comes home I don't know what we'll do. We don't want to make the nursing home permanent but realize we may have to. I would truly hate that because he can actually fun to be around when he's healthy. He loves the Cubs, the judge shows, his game shows, old movies and just listening to our granddaughter running around making a racket or playing cards with her. Unfortunately those times have been few and far between the last few years.