Maintaining feeding tubes(With some history)

davek913July 6, 2008

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.

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Oh gosh ya'll have your hands full and it sounds like many decisions to make. I don't know about feeding tubes, but I do know about having loved ones with disabilities as I have a mom and a brother in a nursing home.

When my mom had her stroke she went to a nursing home for rehab, she did not rehab back as much as I had hoped. I really did consider bringing her home, thinking I could hire some help and be there myself. Then she started having numerous other problems and was in and out of the hospital. One time was for her digoxin levels which were in the danger zone. I realized then that has she been at home, with me being the primary caregiver, she would have died. You see, we saw her that morning, she was very tired so we (my dad and I ) left thinking she needed rest. Wrong, she was having problems. Thank God she was in the nursing home because they caught it.........

I guess what I am saying is this, while we all promise loved ones we will never put them in a nursing home, some times we have to make that choice for the good of the patient, not for our own needs. Think long and hard about what will be best for him.

My brother is only 59, is in late stages of Parkinson's and also in a nursing home. I don't want him there, but I know he is getting much better care there than I could ever give him at home.

I will pray for you and your wife that HE guide you in making the decision that is best for the care and well being of your "brother".

    Bookmark   July 6, 2008 at 7:24AM
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My DH is almost 59, a Viet Nam vet and has had esophageal cancer for about 18 months - he had had a feeding tube the first time for 5 months and currently had had one now for 3 months.

It IS NOT hard to maintain it - he uses the gravity drip system rather than a 'pump. You simply start with some water, then the liquid nutrition, then finish up with more water so the nutrition doesn't 'clog up' the valve into the tubing which is in the stomach.

Feel free to ask for any more details. The other item is to simply keep the insertion point clean, dry and not let any 'drainage' cake up on the skin.


    Bookmark   July 6, 2008 at 3:14PM
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I don't have any personal experience with feeding tubes, but my aunt had one for about two years before she died. She was no longer able to swallow properly; she aspirated everything she attempted to eat.

She managed to stay in her home with round-the-clock caregivers. They were the ones who took care of the feeding tube and her nutrition. As far as I know, none of her caregivers were nurses, but, of course, they had been trained in CPR.

I can only echo what Linda said about placing a loved one in a nursing home. Certainly, it's not the ideal situation. But having a frail, ill body is not ideal either. Sometimes it's a necessary decision. You can only do so much and you try to use your best judgment. You can't spend the rest of your life second guessing every decision you make and feeling guilty. If the time comes when neither you nor your wife can handle the physical and/or emotional burden of caring for him, place him in a decent nursing home without any regrets. You've done a wonderful job so far.

    Bookmark   July 6, 2008 at 3:47PM
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Thank you all for your thoughts. A nursing home is something we were beginning to seriously consider earlier this year. It is getting to the point where we know we may not be able to maintain his health and while it would be far from the first choice for he and my stepdaughter, neither really have an inkling of the emotional and sometimes physical toll it takes. I was to the point where I would give him his bedtime pills, tell him it's time for bed and thinking "Now if he only goes to sleep, we made it one more day." He generally will stay up during the night and I generally stay up until four or five to make sure nothing happens with/to him.

Realistically, we don't feel he has much time left. We were talking with our neighbor about him today and I mentioned maybe five years and Vicky just shook her head no. I got to thinking and realized we had barely helped him squeak through the last four years but it feels like so much longer.

This year really blindsided us. He got through basically all of 2007 without a problem for the first time in years and then all of a sudden, the bottom just dropped out. He has literally been on his death bed the last three times he's been in the hospital.

Thank you for your thoughts Linda. That history is in a nutshell, the true tip of the iceberg. If I itemized everything it would turn out like War and Peace and that's just the last four to five years.

Carolyn, we're not quite sure what type of set up he'll be using. They've got him on the one that has a series of wheels that rotates and kind of massages the liquid through the tube. They put a semi-permanent(As it was described to us) one in during his last stay in the hospital because he kept pulling the nasal type out and they couldn't maintain his nutrition.

My sympathies to you and your husband as well as my thanks to him. I have two brothers that are also Vietnam vets and one had throat cancer seven years ago. I know it can be a difficult time and I hope you're both doing as well as possible.

Shambo, that's basically his situation and they're still trying to pinpoint why he's having the swallowing issue although we're fairly sure it's mental. He started having an issue with it back in November when he stopped eating as much and we were reduced to giving him primarily soft foods and Glucerna, etc. When he had that ulcer, he bled out into his stomach quite a lot and his blood oxygen levels were the lowest his doctor had ever seen, 2.8. It stayed that way for hours so he wasn't getting normal oxygen levels in his brain as well. It's hard to tell with him because his mental state hasn't been "normal" for quite some time. His blood pressure stayed low at the same time as well as his heart rate. The time after that when he had the first UTI, they had trouble with his cardiac system again and actually ended up putting a pacemaker in.

We do serve as his round the clock caregivers. I stay up until four or five or until he goes to sleep and she wakes up at six. I generally sleep until noon or so unless something happens with him and she needs help. We know that a nursing home is something that is almost inevitable, but if we can have him home, home is where he'll be. The only thing that will change that is if he falls into another cycle of illness like this year. If that happens, it isn't in his best interest to be here although we know he'll be unhappy away from home. We hope it doesn't come to that.

Again, thank you all for your thoughts.

    Bookmark   July 7, 2008 at 12:11AM
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We can certainly understand why you are relutant to put him in a nursing home. However, it is time to look around and find the best one for him and his condition. Get him on a waiting list so that if he starts having a lot of problems again, you won't have to move him into just any place on an emergency basis. Perhaps even let him stay there for day care now and then.

Then, if he goes to the hospital again, he can be transferred to the NH for more extensive care than you can give at home. And remember....they are staffed 24/7. It makes a difference. If he improves enough, then bring him home. It may get him out of the hospital a few days sooner.

It sounds as if the road is going to get worse. It's suprising what the individual body can stand, but there is a limit for everyone. The only thing we can be sure of is that he WILL get worse.

    Bookmark   July 7, 2008 at 10:38AM
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Agnespuffin, he's actually in a nursing home right now for rehabilitation purposes. He's been there just over a month and they're basically re-evaluating his mental status now that his health is improved. This last bout with the UTI took him two weeks to recover from to the point where he could communicate again and he was originally evaluated by their staff during that period. One nursing home turned him down because they didn't feel he could do the rehab work and indeed, he couldn't have at that time. Once his health improved is when he was transferred to the nursing home.

We know his long term prospects aren't great but we just take it one day at a time. If you believe his one doctor from years ago, he's already on borrowed time. His doctor from 30+ years ago was a former military doctor who was well versed in his sort of trauma and he told Vicky when he was 28 that it would be a miracle if he saw 35. I guess miracles do happen but again, we know his time is coming sooner rather than later. We can only try to make him as happy and comfortable as we can wihle we can.

    Bookmark   July 7, 2008 at 5:02PM
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It's good to hear that he is getting some rehab. It can be very useful in speeding up as much recovery as possible.

    Bookmark   July 7, 2008 at 7:08PM
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Yes, this is the second time in four years he's gone through extensive rehab. The first time he came back in better shape than he'd been since I've known him, but it's hard to keep him to a regimen because he becomes disinterested when there isn't a third party involved. The local VNA had physical therapists that came out and he really performed for them but when he gets discharged he won't do the same for us. Vicky has said he's been fairly lazy since the early 80's as well.

He spent time in less intensive rehab after each hospital stay but it basically consisted of returning him to a basic level of functioning. Coupled with the fact that he's basically spent 75% of the past six months ill and never really fully recovered from anything that's ailed him and his physical condition had really deteriorated severely.

It will be interesting if he isn't able to eat and the feeding tube does indeed become permanent. I just have to wonder if he thinks it's just something that they do in rehab and when he comes home things will be back the way they were. When he's been in rehab either in or outpatient he always goes along with the routine because he knows he has to, but is loathe to keep it up no matter how many ways you try to explain to him that it's for his own good. He doesn't rationalize like a regular person.

    Bookmark   July 8, 2008 at 1:03AM
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