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Frustrated caregiver

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

My hubby is 3 1/2 weeks post radiation/chemo. He is doing well and is healing. His throat is barely sore now. My problem is getting him to eat/drink. It took the entire day yesterday for him to drink an 8 oz Boost. No, he says, he has no trouble swallowing but nothing tastes good. I am tired of dealing with the peg and tube feedings. Should I let him do all his feedings and completely back off? Should I quit bugging him to drink and eat? He is not taking in any solids, just an occasional milkshake, instant breakfast, or Boost. BTW he quit eating after the first chemo 4 months ago, even before the radiation started.

Ed_PortOrange's picture
Ed_PortOrange
Posts: 110
Joined: Jun 2010

First, I'm now 11 months post treatment and doing well. Your roll as a caregiver is a difficult one and I certainly don't envy your or my wifes position. I also had a terrible attitude about eating for several months after treatment ended. The thing that changed it around for me was feeling well enough to start getting active again. I forced myself to exercise lightly and try to get back to my old normal activities. The biggest motivator for me was my bathroom scale which showed me losing an additional 25 pounds after treatment ended, I was nothing but skin and bones and frankly it scared the heck out of me. Through this all my wife was constantly encouraging (I called it nagging)me to eat and drink more as she threw away plate fulls of food that was processed to make it easy for me to swallow.
It all just takes time and 3 1/2 weeks is just the start of the battle to wellness. Give him time but keep up the encouragement and make sure you share your concerns with your doctors.

Best wishes,
Ed

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

I'm just 5 weeks post treatment now and only stopped tube feeding 3 days ago. Funny thing about that tube. First I hated it. Then I needed it. Then I got used to it and found it uncomfortable to even think about eating any other way. As food doesn't really taste so good and is challenging to move around because of the dry mouth it was just so much easier to tube feed. But a longing for some things to be the way they were really pushed me to convert back to regular eating. Plus; I really hate the way this tube smells and can't wait to get it out. My girlfriend has helped me all this way with food preparation but I've always done my own feedings and flushings and such. I suppose I wouldn't have eaten for as long as I did or wouldn't have begun eating regularly again this soon if someone else was taking care of my feedings. Hard to say what would inspire your husband to get to it. 3 1/2 weeks is not very long. To be honest I didn't even have a day that I felt a little bit good until about a week ago. God bless you for taking such good care of your husband. Hang in there. This is probably the toughest bit.

Bob

Jimbo55's picture
Jimbo55
Posts: 572
Joined: Jun 2010

Echoing the comments from Ed. I certainly can identify with everything he stated. Just to add a bit, some exercise might help to stimulate his appetite. I thought I was eating much better, but like Ed, the bathroom scale showed I was still losing weight. I haven't put on any additional weight since then, but I haven't lost any more either. Keep encouraging him to eat and hopefully his sense of taste will start returning soon. It is a very frustrating time, stay strong for yourself and hubby. Cheers

Jimbo

Hondo's picture
Hondo
Posts: 5670
Joined: Apr 2009

All in good time and he will start eating again, for me it was a little more then two months after rad & Chemo stopped. I reached over and picked up a crumb of some Popeye chicken and for the first time in many months I could taste it, it was all history from there on. Keep asking him to try and when his taste comes back a little he will want to start eating again.

GraceLibby's picture
GraceLibby
Posts: 88
Joined: Jul 2010

My last treatment was on 11/3/11 and I'm eating pretty well now, with some normal exceptions (bread, chicken breast, etc...) I started relying 100% on the tube about 2 weeks prior to the end of treatment and for about 3 weeks after that. I got a proverbial swift kick in the rear by my post-treatment nurse who looked me squarely in the eye and told me that if I was able to swallow (without too much pain), that I needed to start eating again. It took a lot of willpower and I had to push myself to go into the kitchen and find myself something to eat. Lots of trial and error, lots of Boost, and the final realization and acceptance that my relationship with food had totally changed. The smell of food was a total turnoff (including bacon) but I forced myself to do it. I had to if I was going to #1. get rid of the darned tube and #2. resume a "normal" life.

My doc keeps reminding me that healing takes time. If there aren't any other impediments, he'll get sick of the liquids and make the decision to start eating again. Keep encouraging him and offering and hopefully it will happen.

Good luck!

rozaroo
Posts: 667
Joined: Apr 2010

I was told to start with smoothies & carnation instant breakfast to which I added fruit. I had an ulcer which caused me grief but managed to gain weight during treatment & recovery. We kept a ledger of actual feeding times & the amount I took in daily & stuck to it. I had a difficult time keeping down the canned nutrition but would take gravol & it helped me quite a bit. I started off with tasting a variety of foods slowly, I would get turned off quite easily & seriously didn't see the point in eating something I detested as it wouldn't
stay down anyway. Taking sip's of water & flat ginger ale through the day helped a fair bit. At four moth's my taste returned & all was well after that. It simply takes time & we are all different. If something doesn't work one day forget about it & try it again at a latter day. There are still a couple of food item's I used to love & now dislike lol. This is a learning process & I found that stressing over it actually made it worse.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Really, 3.5 weeks isn't very far out at all. Unless you have gone thru treatment you just really have no clue how hard eating can be. People do it every day and they take it for granted. They take the saliva, the swallowing, their appetite, the lovely textures of food, the taste and smell, and everything else we patients lose for granted. The people that would want to take liquid nutrition away from some one that still feels like they need it, is an idiot. I'm sorry to be rude, but I cannot help it. Let me grind up some sawdust or some bran and some ground up dirt and glass mixed with something burny like acid and say here- eat this. That is sort of what it's like to try and eat food after radiation (can't comment on chemo cause I didn't have but I understand it's also not pleasant and both are bad when together). Now take that ground up concoction and try to swallow it dry, because that's what it's like with no saliva trying to choke food down.

I took me a very long time to have "some" pleasure eating again. It's still not easy at 21 months out. My friends who really know me knew that if I could eat, I would be eating. I was a live to eat kind of girl and this was by far the worst thing I've ever been through.

It takes time and you need to go at the pace that your body is comfortable. Not what anyone else says. But you do have to keep trying. I can eat things now that I couldn't eat just two months ago. I started with ice cream, smoothies, Greek Yogurt, oatmeal, sweet potatoes, bananas, avocados, creamed spinach, and soups prepared in my HealthMaster that are smooth and airy.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

This is one of those subjects that gets my hackles up and I have to try and not over react to it, which for a fiery little sicilian this can be a difficult thing. I just bugs me when people tried to tell me to just eat and that I had to force myself thru the pain (which was a ten with 75 mcgs of fentanyl) and and the blood, and the pieces of my mouth slouging off, and to just numb my mouth, which didn't work. And I would have to listen to them say that if it was them, they would keep eating. Yeah, ok. I want to see your mouth and tongue looking and feeling like mine was and you keep eating, when you are spending hrs over the sink with your mouth bleeding. Then when I was trying to eat and found out I had a stricture, I had people tell me that it was all in my head, and that I was just to tense and I needed to relax. Huh? I tell you some days I was almost moved To violence and wanted to bop these people on the head, hard. Just sayin...... :)

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Its actually a picture of me at the Pennsylvania Rennaisance Faire. The skirt is a shiny material. Like an acetate or something? It's just a draw string skirt made from a big square piece of material. Typical peasant blouse and that was the new corset I bought because I lost so much weight and the old one is wayyyy too big. I have quite a few costumes. All different combos and colors. :) I love any excuse to get into a costume. Lol

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