Struggling Caretaker

Is he willing to talk to someone other than you? a psychologist or a social worker maybe? My husband's nutritionist gave us some really good tips as well as recipes for high calorie easy to eat foods. I am a caregiver too. I know how hard of a job it is. DarcyS is right that a diversion would be great for the both of you. I am thinking of both of you.

Nwife,

Welcome to the H&N forum, lurking is good, participation is better (maybe).

It sounds like he is eating fairly well, just add some calories (nuts, oil, etc.) and he will be gaining weight.

It also sounds like he is a bit depressed?  It is a little soon, but make sure his blood work and Thyroid are good.

I did not get off smoothies for 7 months, but my wife banged me on the head and I started flying right (just kidding).

Best of luck,

Matt

I would certainly ask about a feeding tube what can it hurt.  Head and neck radiation, we were told up front was the worse.  Our doctors recommended my husband have a feeding tube before any treatment was started and they told him if not needed easy to remove.  Well thank goodness he went with the feeding tube because after one week of radiation he couldn't swallow at all.  He was very underweight to begin with, always was. 

As long as your husband agrees to keep swallowing if he gets a feeding tube, I don't see why not.  There are others who will disagree.  My husband lived on a feeding tube until after surgery.  He underwent radition and chemo first and then 6 months after treatment ended, we found out that treatment didn't work so he had surgery and during the surgery we found out that the radiation had really damaged the back of his throat and it had to be reconstructed.  About 2 months after surgery he was able to eat again, slowly and only things easy foods to swallow and then after another 2 months the feeding tube was removed.  But a year after surgery he was diagnosed with a second primary and surgery was ruled out.  So he underwent more radiation and chemo.  At first they weren't going to insert a feeding tube but due to his weight, they did, thankfully because from that day until the day he passed he couldn't swallow again.  He really wanted to but couldn't radiation damaged too much. 

I can say that in the 5 years he fought the battle, he never got mad at me, but then again he never really told the truth to the doctors or the hospice nurses he had.  I would have to tell them he was lying to them.   He would always tell them he was doing good and no pain.  Only until the end would he tell the hospice nurses how he really felt, except for the pain.  And yes he was depressed but wouldn't tell them, I had too.  I told the doctors the truth and he didn't mad at me and in fact would say without my help he wouldn't have made it as far as he did.  Men are stubborn is all I can say and won't tell the full truth when it comes to their health.

Get his thyroid checked because radiation can damage the thyroid and that regulates so much.  At first mine was diagnosed as hypo but then when he started losing too much weight, he was diagnosed as hyper so they had to adjust his thyroid medication until he was hypo again.  Had to crush all his medication and then mix with water and put into his feeding tube.  He was never able to take time release medication because you can't crush that.

There are drinks that are very high in calories and vitamins.  If you insurance will cover it, get a prescription from your doctor.  They are expensive but definitely help.  Even carnation makes one that is very high in calories.  Research them.

Wishing you both peace and comfort and take care of yourself too because you are important too in this journey.  Caregiving is very hard.

My husband completed treatment without a feeding tube, losing about 10 pounds.  However, after treatment he started dropping weight like mad and after a 35 pound total loss, his doctors said he needed a feeding tube immediately.  Get the tube.  It is literally saving his life, he doesn't have to worry about choking down calories when he has zero appetite.  He still eats some soft foods daily and drinks plenty.  But not having to worry about eating enough calories is a huge bonus.  To give you an indication of how many calories healing takes, he's intaking about 1000 calories MORE a day than prescribed.  At his last appointment he had not gained a pound since having the feeding tube.  But thank goodness, he hadn't lost any either.

to gain our weight back....I still haven't gotten back to what I weighed when I started treatment, and that was 4 years ago.  It seems that your hubby is taking in a decent amount of calories....but for his metabolism, it's just not enough.  Our bodies become roaring furnaces going through, and healing from treatment....we burn energy at twice the rate.  He may be right about needing a feeding tube for a while, especially if he's in a lot of pain when he swallows, or is choking when eating.  I think it was Sash who mentioned the protein powder to add to the scandi shakes....lots of calories and protein in it.  It may be, that the lack of taste, and the lack of spit are making eating uninteresting.....or worse, thinking that food will ALWAYS taste like sheetrock, or liquid plaster....that idea has gotten more than a few people down.

Some things I learned during and after treatment.  1) the blander, the better....I could taste vegitables, but fruits either burned or tasted awful.  No spices, very little salt....bland in the real sense of the word.  2)  Milk....4% milk.  I managed to sip 1/2 gallon a day.  It gives the illusion of having spit way longer than sipping on water.  Plus it's packed with calories, and it doubles for hydration.  3) I ate by an alarm clock that I kept beside my chair.  Having no appetite, and no real interest in food....I couldn't count on "feeling hungry" to know when to eat.  Let HIM have the clock, so you're not the meanie making him eat (the clock says it's time).

I know you're having a hard time, emotionally....it's ok to leaving him alone for a few hours, and go out with girlfriends for lunch, or a movie....he really doesn't hate you....but he does feel comfortable taking his anger out on you (my husband would be the same way). This doesn't go on forever....honest!!  When he's back to feeling better, gaining weight, and getting out....he'll feel grateful that you helped him through this, stuck by him even tho he was being a jerk. 

p

PS....Maybe you should go to the Oncologist alone, and give him a heads up on possible depression....if the Dr. brings up antidepressents, he might go for it.  Lots of us have really dragged our feet about taking them, I did for 3 years....when I finally gave in, I couldn't believe how much they helped me out of the funk. 

I am amazed at people who make it through without the tube. You can put so much into the tube, supplements, vitamins, medicine, juices (I put in over 10 pounds a day of vegetables), soups, blended dinners, eggs, high calories shakes and water. Swallowing is very important, so you have to continue some eating and drinking.