How should a caregiver handle the eating issue?

buzz99
buzz99 Member Posts: 404
in Head and Neck Cancer #1
My husband is a little bit past the 4 week mark post radiation/chemo. I really don't know what to do with meals. Should I just let him decide what he wants (which is nothing)or fix him a plate of food and have him come to the table? For dinner last evening, I presented him with a very small portion of cut up rotisserie chicken and cauliflower/broccoli (cooked tender)with cheese sauce. He took only a few bites and the expression on his face was difficult to take. He looked like he was being tortured. I had little appetite myself, having to witness his agony. I have a lot of anxiety about his calories, fluids, and protein. The dietitian does not want him to have more than 80 g of protein due to kidney issues. He has been dizzy due to inadequate fluid intake (at least that is what the doctor thinks). I spend a lot of time keeping a record of his intake and when evening comes and he is short on calories, fluid, or protein, I feel compelled to nag him about intake. He is getting 3 cans of tube feeding formula per PEG each day. Per the dietitian's recommendation, he is giving himself the feedings now. Remarkably, Buzz did not lose any weight during treatment but now he has lost 6 pounds in two weeks. I have to constantly remind him to drink. Should I back off completely? Gently remind him? I am afraid he would become dehydrated and starve without my intervention.

Comments

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #2
    caregiver's perspective
    My husband lost no weight during treatment which ended in August 2010: he has since lost about 35 pounds and struggles to keep weight on. Jim rarely had a day that he did not consume 3500 calories so there is something else that goes on that keeps the metabolism high and burning those calories off!

    Although I did prepare meals that I hoped Jim would find palatable and of a consistency which he could eat (per a doctor's recommendation, Jim had all teeth removed prior to treatment), he ate much the same as the rest of the family. He never used the PEG for nutrition and had it removed a month after treatment ended.

    I agree with your husband taking over the feedings and with you providing nutritious, appealing meals, but, ultimately, it is up to your husband to eat. Fortunately, Jim was always the person with a glass of iced tea in his hand so hydration was never an issue.

    I would say Jim really perked up when he had the energy (and mental motivation) to start taking our short walks again every evening. Just that little bit of exercise seemed to propel him forward. With the determination he already had to get through the treatment and months leading to the initial post-treatment PET scan, the walks seemed to help his mental state and he began preparing more of his own meals.

    I know this is hard for you. I talked with Jim's doctors, in his presence, expressed any concerns I had and they were addressed. It seems each individual deals with cancer and its treatment differently and we have to respect that and TRY not to worry TOO much, although I know how difficult that is.
  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    #3
    Suggestion
    Buzz99,

    Here is a small suggestion. First, KNOW how many calories your husband needs to take in each day. What is the weight he is trying to maintain? Lets say for now, he wants to be at 160 lbs. Multiply that weight by 12 and that is the total calories he needs to maintain his weight ( 1920 calories per day). Figure out the number of cans he needs per day and then set them on the counter in the kitchen. That way, he will know what he needs without you reminding him all the time.

    If he eats some yogurt, subtract the calories that he took in from the can amount, etc.Or he may want to add to the amount if he wants to gain weight. I went from 240 lbs down to 190 lbs and have slowly gained back what I wanted to. I am now at 220 lbs and I stand 6'2"
    so I am comfortable carrying this weight.

    Chicken, although you thought you were cooking him a nice meal, let me tell you that is the last thing we want to try at this time frame. I still have a rough time with chicken and I am 6 years out. It has to be smothered in gravy in order for me to even think about trying it, no matter how moist it may seem to the cook. We, the patient will try things at our own pace, not the caregiver's. What seems moist to you may feel like he is trying to swallow a small piece of cement and force it down a very dry cement drain. Cement on cement doesn't move well, even when flushed with water.

    If he can take the cans in now and get the nutrition that he needs, he will work thru this. If you nag him, he will back away more and you will only work yourself up. He needs you to be there if he needs to lean on you.

    My Best to Both of You and Everyone Here
  • rozaroo
    rozaroo Member Posts: 665
    #4
    MarineE5 said:

    Suggestion
    Buzz99,

    Here is a small suggestion. First, KNOW how many calories your husband needs to take in each day. What is the weight he is trying to maintain? Lets say for now, he wants to be at 160 lbs. Multiply that weight by 12 and that is the total calories he needs to maintain his weight ( 1920 calories per day). Figure out the number of cans he needs per day and then set them on the counter in the kitchen. That way, he will know what he needs without you reminding him all the time.

    If he eats some yogurt, subtract the calories that he took in from the can amount, etc.Or he may want to add to the amount if he wants to gain weight. I went from 240 lbs down to 190 lbs and have slowly gained back what I wanted to. I am now at 220 lbs and I stand 6'2"
    so I am comfortable carrying this weight.

    Chicken, although you thought you were cooking him a nice meal, let me tell you that is the last thing we want to try at this time frame. I still have a rough time with chicken and I am 6 years out. It has to be smothered in gravy in order for me to even think about trying it, no matter how moist it may seem to the cook. We, the patient will try things at our own pace, not the caregiver's. What seems moist to you may feel like he is trying to swallow a small piece of cement and force it down a very dry cement drain. Cement on cement doesn't move well, even when flushed with water.

    If he can take the cans in now and get the nutrition that he needs, he will work thru this. If you nag him, he will back away more and you will only work yourself up. He needs you to be there if he needs to lean on you.

    My Best to Both of You and Everyone Here

    Caregiver
    At four weeks post treatment solid food was a huge turn off for me! My dietician prescribed
    five to six cans per day to keep my weight up untill I was having enough high calorie shakes to replace a meal. You need a daily amount of calories required to heal & build your
    body back up after treatment. Tell your dietician he is not getting enough solid's & start pumping in the water. He will dehydrate. This is very easy to do. Plus pushing solids too early did not work for me. I wish you luck!
  • Hondo
    Hondo Member Posts: 6,636 Member
    #5
    rozaroo said:

    Caregiver
    At four weeks post treatment solid food was a huge turn off for me! My dietician prescribed
    five to six cans per day to keep my weight up untill I was having enough high calorie shakes to replace a meal. You need a daily amount of calories required to heal & build your
    body back up after treatment. Tell your dietician he is not getting enough solid's & start pumping in the water. He will dehydrate. This is very easy to do. Plus pushing solids too early did not work for me. I wish you luck!

    Hi Buzz

    I survived on just Grits during and after treatment, it was all I could get down and I did not have a PEG tube. Sometimes my wife would also boil an egg for me and smash it up very find, it was hard but I make it.

    Hondo
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #6
    Hondo said:

    Hi Buzz

    I survived on just Grits during and after treatment, it was all I could get down and I did not have a PEG tube. Sometimes my wife would also boil an egg for me and smash it up very find, it was hard but I make it.

    Hondo

    I think he has to sort of do
    I think he has to sort of do it on his own. When I had moments of clarity, I would set up my cans for the week. I think if you did this for him daily that would be great. This way he knows what he needs to put in, and you can monitor him without being too vocal as you can clearly see what was taken out and used for the day. Example of my daily set up I kept a box on the kitchen table with the following in it:

    5 cans of Peg Tube food
    1 small can of prune juice (6oz?) *
    1 jug of the required amount of water I needed for the day (I used to know the oz but I forget)
    1 small single serv bottle of gatorade
    1 baby food jar of either sweet potato or squash *

    Then I also put thru an Activia yogurt daily. I put the card board activia picture there to remind me.

    *I needed extra potassium and fibre in my diet

    I also was told to consume 2400 calories. When your body is in a wasting state it can require way more calories than what it normally needs.

    If all he can do is thru the PEG, then that's all he can do. If he can drink water and shakes, excellent. I know you said he likes Dr. Mary's shake. Give him that to drink. Tell him you will make him anything he would like to try and eat. Then be prepared that he may take two bites and waste it. If he says no, he doesn't want anything, well then you know that the daily box that you set up for the day has the required amount of calories and hydration that he needs for the day. He is aware of those needs and he can put it all thru the tube. I am assuming that he is well enough to do his own feedings. (there was a couple weeks I wasn't and had no one to help me. I was pretty out of it and bad) If he is capable then he will do it if he chooses to. If he doesn't you may also want to check for signs of depression.

    Chicken, and meat in general can be hard to swallow after treatment. (almost impossible for me because I have a stricture and it just won't go down)

    I think he needs to take baby steps. For someone that is having trouble swallowing solid food is just not going to work. Chicken and soft veg is too hard and too painful to do. Better things to try are milk shakes, puréed cream and veggie soups served at room temp, very very fine oatmeal (grits hurt my tongue, still can't eat polenta or grits but I know some could do it), puréed carrots, custards, puddings, cottage or ricotta cheese, split pea soup (home made without all that salt or ham and chunks), purée beans, boiled sweet potatoes with butter, yogurt. Once he can get these things down with no problem then maybe he can move on to more solid foods.

    I know this is hard on you both. Hope you find something useful here to help you.
  • buzz99
    buzz99 Member Posts: 404
    #7
    sweetblood22 said:

    I think he has to sort of do
    I think he has to sort of do it on his own. When I had moments of clarity, I would set up my cans for the week. I think if you did this for him daily that would be great. This way he knows what he needs to put in, and you can monitor him without being too vocal as you can clearly see what was taken out and used for the day. Example of my daily set up I kept a box on the kitchen table with the following in it:

    5 cans of Peg Tube food
    1 small can of prune juice (6oz?) *
    1 jug of the required amount of water I needed for the day (I used to know the oz but I forget)
    1 small single serv bottle of gatorade
    1 baby food jar of either sweet potato or squash *

    Then I also put thru an Activia yogurt daily. I put the card board activia picture there to remind me.

    *I needed extra potassium and fibre in my diet

    I also was told to consume 2400 calories. When your body is in a wasting state it can require way more calories than what it normally needs.

    If all he can do is thru the PEG, then that's all he can do. If he can drink water and shakes, excellent. I know you said he likes Dr. Mary's shake. Give him that to drink. Tell him you will make him anything he would like to try and eat. Then be prepared that he may take two bites and waste it. If he says no, he doesn't want anything, well then you know that the daily box that you set up for the day has the required amount of calories and hydration that he needs for the day. He is aware of those needs and he can put it all thru the tube. I am assuming that he is well enough to do his own feedings. (there was a couple weeks I wasn't and had no one to help me. I was pretty out of it and bad) If he is capable then he will do it if he chooses to. If he doesn't you may also want to check for signs of depression.

    Chicken, and meat in general can be hard to swallow after treatment. (almost impossible for me because I have a stricture and it just won't go down)

    I think he needs to take baby steps. For someone that is having trouble swallowing solid food is just not going to work. Chicken and soft veg is too hard and too painful to do. Better things to try are milk shakes, puréed cream and veggie soups served at room temp, very very fine oatmeal (grits hurt my tongue, still can't eat polenta or grits but I know some could do it), puréed carrots, custards, puddings, cottage or ricotta cheese, split pea soup (home made without all that salt or ham and chunks), purée beans, boiled sweet potatoes with butter, yogurt. Once he can get these things down with no problem then maybe he can move on to more solid foods.

    I know this is hard on you both. Hope you find something useful here to help you.

    What is a caregiver to do
    Thanks everyone for some very wise comments. Only the patient knows what it is like to force down food which is unpalatable and painful to swallow. I won't push the solid food and will offer liquids for now. Putting out the daily cans of formula plus supplements is a good idea. That way he can actually see what is required and go from there. We have discovered Gatorade Recover and it actually has 8 grams of protein per serving. Buzz seems to like it (or should I say tolerate).
  • ekdennie
    ekdennie Member Posts: 238 Member
    #8
    buzz99 said:

    What is a caregiver to do
    Thanks everyone for some very wise comments. Only the patient knows what it is like to force down food which is unpalatable and painful to swallow. I won't push the solid food and will offer liquids for now. Putting out the daily cans of formula plus supplements is a good idea. That way he can actually see what is required and go from there. We have discovered Gatorade Recover and it actually has 8 grams of protein per serving. Buzz seems to like it (or should I say tolerate).

    food
    some pasta like macaroni were the easiest for me to eat early on. it had minimal flavor, didn't take a lot of time, and when slightly overcooked, it went down well. just be patient...it can take weeks, even months before he is eating more. most of us also develop a mild post treatment depression. you have gone through treatment, you wish you felt better, and all the emotions hit all at once. just make sure he has something to drink all the time...when he is hungry enough he will eat.
    avoid adding pepper to food...I wanted to eat foods but once I tasted black pepper, it burned so much I couldn't finish eating it.
    oh, and it was painful for my family to watch me eat, but given enough time they have mostly gotten over it. it is still hard when I want to eat something that everyone else is enjoying and can't, but I know I will be able to eat it someday. I am only just under 3 months post treatment and the healing takes time.
    hugs!

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